4 Ethical reflections on the new technology of neural prosthetics
TECHNO-ANTHROPOLOGY
By:
Hassan Al-Sayeed,
Christina Matthiessen,
Elisabeth Ertner Linnebjerg and
Claudia Bagge-Petersen
Supervisor:
Klavs Birkholm
Date:
12/17/2012
Robot arms, Amputees and Experts
A techno-anthropological project on neural prosthetics
Characters: 146.000 Pages: 96
Abstract
This project describes the three major topics technology, organisations and society with concerns of the relationship between them. It starts by describing neural prosthetics and moves on with an analysis of the research organisation ‘Center for Sensory-Motor Interaction’ and its network of actors, contributing to the development of neural prosthetics. It sheds light on society’s view on people who lack a limb and use neural prosthetics, while it tries to describe the image these individuals have for themselves. In our project, we use interviews and theories as our main source for analysis. Ethical approaches are discussed, and they work as the overall reflections towards the dilemmas which inevitably emerge when dealing with the combination of this kind of technology and humans. Our project ends with a conclusive direction towards the three main topics. It gives an insight on how an expert organisation is structured and works with this kind of technology. It also gives an idea of which prospects there are in the technological development of neural prosthetics. On one hand, our project manages to give in depth views of the processes that users undergo interacting with this specific technology, and on the other hand it gives some approaches for how society reacts towards the use of this technology. The essential ethical approaches in this project are used to discuss the different aspects touched upon in a reflecting manner, and it shows the importance of ethics in these matters. The conclusion is that the expectations for how the future prosthetic should be, vary from actor to actor (experts and users mainly) so these have to be argued/negotiated. The means towards these goals have to be taken into consideration in order to have an ethical development.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
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Abstrakt
Dette projekt beskriver de tre emner teknologi, ekspertorganisation og samfund i sammenhæng med udviklingen af neurale proteser, samt de problemstillinger som relationen mellem dem medfører. Det beskriver som udgangspunkt neurale proteser og fortsætter med en analyse af organisationen SMI og dets netværk af aktører, samt belyser hvilken måde disse bidrager til udviklingen af neurale proteser. Projektet prøver at belyse samfundets syn på mennesker, der mangler lemmer og anvender neurale proteser, mens den forsøger at beskrive det selvbillede disse personer har. I projektet bruges interviews og teorier som de vigtigste kilder i analysen.
Etiske tilgange til anvendelsen af neurale proteser bliver berørt, og disse etiske overvejelser fungere som overordnede refleksioner af de dilemmaer, der uundgåeligt dukker op, når man beskæftiger sig med denne kombination af teknologi og mennesker. Rapporten slutter af med en konkluderende etisk tilgang til de tre vigtige komponenter. Projektet giver en indsigt i, hvordan organisationen er struktureret, og på hvilken måde den behandler denne form for teknologi. På samme måde gives en idé om hvilke fremtidsscenarier, der forelægger i den teknologiske udvikling af neurale proteser. For det første formår projektet at give en i dybdegående indsigt i hvilke processer brugere af teknologien gennemgår, når de interagerer med denne specifikke teknologi.
For det andet giver den forskellige tilgange til samfundets syn på brugen af teknologien. De etiske tilgange i dette projekt anvendes til en reflektering over de forskellige aspekter af forholdet mellem det teknologiske samfund og individet og fastslår nødvendigheden af etiske refleksioner indenfor dette felt.
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Contents
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
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1 Introduction – A research group, a technology of the future, hopeful amputees and ethical concerns
Different solutions for people with lacking limbs have been developed throughout time. Wooden parts, hooks, plastic look-a-likes and other kinds of material, colors and shapes have been invented to make up for lacking capabilities, aesthetic anomalies and psychological issues in not having a ‘normal’ body. Today, technological development provides even more complex solutions for a missing leg or arm. The high-tech prosthetics of today might look more like robotic parts than actual human limbs. The new technologies that we will focus on in this project are neural prosthetics since a lot of research is happening in this area for the rehabilitation of amputees and people born with a missing limb. Neural prosthetics are different from former prosthetics in that they are, at different levels, connected to the human body and have the possibility to read the signals from the nervous system. Neural prosthetics are thereby able to move and act in compliance with the will of the user. Looking into the specific technologies of this area, we have chosen to focus on the following: Brain-Computer-Interface and Neural Prosthetics. A specific example of a neural prosthetic that we will briefly describe is the Targeted Reeinervation.
Describing these technologies will be the starting point of our project.
After going into details about these technologies, our next chapter will be about the organization of experts. In the field of these new neural prosthetics there are different stakeholders involved, in the following called actors, which might have different approaches, opinions, beliefs and knowledge about how prosthetics can and should replace a missing limb. We focus on the experts that research in the area of brain signals for the development of neural prosthetics. In our project we have chosen to focus on one particular expert culture that works with this kind of technology and that is the scientific team at the “Center for Sensory-Motor Interaction” (SMI) at Aalborg
University, Denmark.
Moreover, in the network of actors we also include the users; the people that are missing limbs and that might have different opinions on what a good prosthetic is and how it can be regarded in relation to the rest of the body. The users are going to be the focus of the third chapter of our project. The information, quotes and data that we use concerning their perspectives, lives and
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012 challenges derive from secondhand data, from a master thesis and web pages about being an amputee, as we did not manage to conduct related fieldwork of our own. We investigate the psychological hardships that an amputee faces as well as the way the public, the media and the society view the matter and treat those people.
In our project we will also discuss about the future of the technology of neural prosthetics. The main approach of our project will be an anthropological one towards the different actors and how their perceptions correlate. Therefore, following the discussion concerning the users we will move on to the fourth chapter that includes anthropological theories about Social Stigma, Rites-of-
Passage and Actor-Network theory. By reflecting on these theories we will try to give an answer to what neural prosthetics mean to users, and see how that relates to what it means to the expert culture that develops the technology, but also to the society.
In the end of our project we will include a discussion concerning relevant ethical issues. The ethical aspect is of great interest for our project and we will try to illuminate different important ethical concerns in the relationship between experts, users and society in order to make an analysis on the relationship between the actors concerned with the same object; the neural prosthetic.
Though the matter of concern is the same; neural prosthetics, the ethical reflection might not be the same. What consequences can there be for the individual and the society?
1.1 Problem formulation
Based on these intentions and reflections we reached the following problem formulation:
How do expert research, technology processes, social identities of users and ethical reflections play together in creating and implementing neural prosthetics as a solution for people that are missing a limb?
1.2 Methodology
In order to commence with this project and go deep in the field of neural prosthetics, we wanted to get in touch with some experts and professionals who are part of this field. We saw this as a necessity for the quality of our project. There is a lot of information about the specific technology
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on the internet, but we were needed more information to be able to answer our problem formulation. Therefore, we got in contact with the Danish research center SMI. As the technology of Brain-Computer-Interface was the research area of SMI we had the chance to experience things
“first hand” and get a lot of information that we have included in the following. We had the chance to visit SMI and conduct three semi- structured interviews with an associate professor and two PhD students, gaining a lot of useful and interesting information regarding their work.
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2 The technology of neural prosthetics, the organization of experts, the users and the patient organization
2.1 A descriptive overview of the technology of neural prosthetics on a general level and an example of a specific technology
In the following chapter we will begin by describing the technology of neural prosthetics and provide more details about the Brain-Computer Interface (BCI) and the Targeted-Reeinervation
(TR). The technology TR is related to Brain-Computer-Interface, and is of great interest to us as there are great expectations from this field to improve the quality of lives for amputees and patients suffering from motor disabilities.
Describing the Targeted Reinnervation for Enhanced Prosthetic Arm Function will provide a clearer picture on what techniques can be used to connect the human biology with an electronic system.
TR is in short meant to be an interface in which the first step is to deactivate the nerves of the skin of a targeted muscle. Then the targeted muscle, that could be in the area of the chest, is reeinervated and produces the so called EMG (electromyographical) signals that will control the movement of the prosthetic device. A recorder in the prosthetic is able to read the impulses of the nerves through the muscles and thereby move the way the user wants it to move when he/she just thinks about it.
We will investigate and describe the various technical mechanisms triggered when the technology is used. Based on this knowledge, we will examine how far researchers are in the development of this technology, and what prospects there are for future improvements of the technology. In addition, we will discuss the research they are doing at SMI in the field of neuroscience. More specifically we will investigate and describe which technologies SMI uses and produces for the contribution to neural prosthetics. Last but not least, we will look some possible physiological complications or side-effects these technologies can have on the biology, and which technologies could improve or eliminate such complications.
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2.1.1 Neural prosthetic on an overall level
The technology of neural prosthetics is placed in the field of neural science and biomedical engineering. Neural prosthetics are meant to provide solutions for different purposes. The
cochlear implant is already widely known and implanted in a lot of patients as a solution for hearing problems. Apart from this, neural prosthetic research is done in the area of improving sight, neural malfunction in the brain and loss of limbs. The focus of this project is neural prosthetics that can provide a solution for a missing limb.
This scientific area is also termed neural rehabilitation which basically means the repairing of a damaged connection between the central nervous system (that consists of the brain and the spinal cord) and the peripheral nervous system (e.g. the nerves in an arm). The connection has been either severely damaged or totally lost, as when a limb is amputated. Neural rehabilitation seeks to provide a neural interface that via, for example a computer can transmit the signal sent from the brain to e.g. a robot arm that then makes a movement and sends back a signal to the brain ( smi.hst.aau.dk 6 ).
In the area of neural prosthetics most of the experiments are conducted on animals and we had the chance to acquire some information about the relevant processes from the interview at SMI.
As the BCI expert Winnie Jensen claims, the experiments take place in two different ways. The first category of experiments consists of those termed as acute and usually last no longer than a day. In these short-termed experiments electrodes can be placed on the nerves or the brain for the needed measurements to be made. The animal is anesthetized throughout the whole process and at the end of the experiment it is put down. The second category is the one termed by Winnie as
chronic in which the electrode is put in the brain of the animal and the experiment doesn’t take place immediately but after a few days. The animals, which in this case are usually rats, go through a recovering period for a few days and are trained to perform little tasks such as pressing a button to receive their food. Then, when they start doing these little tasks that they are taught, the scientists can start measuring their brain signals (Interview Winnie).
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2.1.2 The technology of the field of Brain-Computer-Interface
The field of BCI is evolving more and more over the years since researchers have now access to cheap computer technology that is at the same time efficient enough to be able to perform the high-speed analyses of the function of the brain. In addition, nowadays there is more knowledge concerning the brain signals and the central nervous system. We are moving even closer to the possibility of controlling the neural prosthetic’s arm movement directly through brain signals instead of the use of muscles. The applications of BCI technology offer hope to people with amputations, but also to people who suffer from other conditions such as multiple sclerosis and muscular dystrophies (oxfordscholarship.com.zorac.aub.aau.dk).
According to the description of the process by the two American research physicians Jonathan and
Elisabeth Wither Wolpaw, in BCI the activity of procedures of the central nervous system (CNS), that includes the brain and the spinal cord, is measured. Such procedures are neurochemical, electrophysiological and metabolic and are recorded with sensors placed within or on the surface of the brain or on top of the scalp. The brain signals are then turned into artificial outputs that improve the existing central nervous system’s outputs and result in the change of its interaction with the body or the outside world. It is the CNS area that is responsible for our daily activities and movements such as walking, speaking, dancing or the ability to lift an object, and it is the CNS area that changes in order to adapt to our bodily changes that come with time and age. The research and focus of this field on the area of neural prosthetics is to find a way to a better quality of life for people who are lacking a limb. BCI refers to the connection of the nervous system with a computer. Neural prosthetics refers to the connection of the nervous system with a prosthetic device. There isn’t a great distinction between these two areas. They rely upon the same experimental methods, share the same goal of improving the life of disabled people and perform the similar, if not the same, surgical techniques (ibid).
2.1.3 Invasive and Non-Invasive methods
To measure the brain signals, BCI technology uses invasive and non-invasive methods. The invasive method involves placing a subject inside the grey matter of the brain, a component of the central nervous system, of the human or animal that is going to be interfaced. Based on the research we
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have done and the interviews we carried out at SMI, as we mention also further on in our project, the invasive way of measurement is used less compared to the non-invasive.
The invasiveness of a BCI sensor is a technology that is still in a developmental phase and still involves risks. It can be harmful for the organism because these external devices can cause tissue damage, infections and loss of functionality for a long period of time (ibid). There are ethical considerations and objections for making such experiments on animals and even more on humans. Even when this method is implemented, it is on animals, rats and in fewer occasions’ monkeys. This is a topic that we discuss in more detail later on in our project.
For non-invasive procedures there is no implantation of a foreign object, but only objects placed outside the head and the body. A problem when working with non-invasive methods is the wrong results of an experiment caused by artifacts. That means that after the investigative procedure there are external factors that have obscured the brain signals and have showed up in the results.
Such non-brain signals can derive for example from body movements, from noise coming from the external environment and from cardiac activity. Distinguishing the artifacts from the brain signals is not an easy or always successful procedure, and it can be an obstacle for the effective development and research in the BCI area (ibid).
Even though BCI is a promising technology for the future, right now it is used and developed within the safe environment of a laboratory. Currently, there are no more than just ten people using BCI in their daily lives. These are people suffering from amyotrophic lateral sclerosis
(oxfordscholarship.com.zorac.aub.aau.dk). So there is still a lot to be done before amputees can use such a technology themselves.
At SMI the “Neural Engineering and Neurophysiology of Movement”-group led by Winnie Jensen works on finding a cure for phantom pains that many amputees suffer from but that science hasn’t yet been able to find a satisfying explanation for. The hypothesis that they work on is that the pain comes from the non-returning signals that the brain sends to the limb that is no longer there
(interview with Winnie Jensen). By understanding how the signals and the pain relate to each other they seek to restore or rather replace the signals. The scientific term for the brain signal resulting in an intended movement of the hand/arm/leg/etc. is called the motor function.
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Through our interview with associate professor Winnie Jensen we were surprised to find out that the research done at SMI was not so much about how to make the actual robot arm (prosthetic) as it was about searching for answers on how the body works; that is how the brain sends signals to an arm or leg in order to make a specific movement. At SMI’s website it is stated:
“Computational neuroscience, signal processing, modeling, electrophysiology, instrumentation and electrode design are cornerstone methodologies used for the development of new technologies and applications in motor physiology and neural rehabilitation. These novel developments provide venues for cutting-edge research to emerge. Applications are made possible by the translation of research knowledge from the animal laboratory to human experiments and clinical settings. Such knowledge is used to further design and refine rehabilitation regimes for individuals with spinal
cord or cortical injuries or musculoskeletal pain.” (smi.hst.aau.dk 2)
According to the personal beliefs of the people working at SMI, the knowledge produced at the unit is setting the ground for the whole area of BCI research. Furthermore, the quote implies that they build their research upon transferring knowledge they gain from experiments on animals, to knowledge about how the human body works and can be rehabilitated.
2.1.4 Targeted reinnervation
As already mentioned, at SMI they are researching in the area of BCI. For this purpose they make tests on animals and that means that they are not implanting the electrodes inside human brains.
However, the actual interaction of neural prosthetics with human beings has been tested elsewhere, e.g. at the university of Chicago, under the exact form of a technology called TR.
TR is a surgical process that is aimed for people with upper-limb amputations. The goal is to improve control of neural prosthetics for individuals that have particularly a high-level amputation
(rehab.research.va.gov). That is either a transhumeral condition, where the amputation is in the upper area of the arm above the elbow, or a shoulder disarticulation, that refers to the amputation where the shoulder is (cdha.nshealth.ca). Amputations of the shoulder disarticulation level involve the use of muscles of the chest and the back (Kuiken et al. 2008:46).
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Figur 1 Targeted reinnervation (Kuiken et al. 2007:377)
When TR was in a starting phase, scientists had to test the technology first on animals, as they still do, to prove that it was a feasible idea before they could proceed with any experiments on humans. They found out that in order to obtain myoelectric signals of adequate size there should be specific requirements for the types of muscles. They should be one centimeter thick and a minimum of three to five centimeters across. Also, there should be as less possible soft tissue and fat between the skin and the muscle. (ibid)
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Figur 2 Diagram of targeted reinnervation surgery. It shows the nerves transferred to each muscle segment (Kuiken et al.
2007:374)
The surgery of TR takes place only after the trauma of the amputation has fully healed. The process involves transferring two to four residual peripheral nerves to the target muscle during an operation that can last up to five hours. The nerves of the muscular system are denervated with surgery in the chest or the residual limb and the nerves that have been transferred will substitute physiologically the missing arm. The correlation between the movements of the prosthetic device and of the new target muscle contractions is then enabled (rehab.research.va.gov).
2.1.5 Post-TR-surgery phase
After the surgery, apart from pain and oedema, patients may re-experience phantom limb pain. A lot of effort has to be made from the patient’s side in order for him/her to learn how to use the prosthetic device. In this postsurgical period it is important that the patient follows a program of strengthening the target muscles by performing patterned movements. In this way the electrical signals that are produced will be detectable by the surface electrodes.
It takes a lot of work and patience for both the patient and the therapist. Moreover, there can be no resistance applied to a missing limb and so the solution for the individual exercising the new arm at home is to make longer the time of the contraction and of the repetitions of this activity.
Practice is needed to understand the boundaries of how much strength and effort needs to be applied. All these activities are based on the professional’s recommendations and experience.
They are also performed under the supervision of the therapist (ibid).
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The process after TR takes up to seven months. The first week after surgery, focus is put on dealing with the pain, the swelling and the healing of the wound. Three weeks later there are no expectations for any visible muscle activity, but there are expectations of some “movement” of the prosthetic joint. In the tenth to fifteenth week, there is usually some twitching and that is the point to commence with the process of strengthening, as it was previously described. Three to five months after surgery the patient goes from the repeating patterns of exercise to strengthening more specifically the muscle contractions. Months sixth and seven are about the fitting of the device and the testing of the success and effectiveness of TR (ibid).
2.1.6 A specific case of TR
Kuiken et al. wrote an article in 2007 about their successful “implementation” of a neural prosthetic in an arm-amputated woman. The reason why implementation is marked in citation is that the actual technological prosthetic wasn’t surgically implanted in the woman. However a surgery was needed to prepare her body, or rather the nerve endings for interaction with the later attached prosthetic. The research group themselves explain the technology as a biological neuralmachine-interface. The idea is to use the nerves from the amputated limb, or the remaining parts of the nerves, and connect them to alternative muscle groups that have lost their purpose after the limb was removed, in this case the muscles above the breast. Now the reinnervated muscles work as amplifiers for the signals of commands that the brain sends when the woman is thinking about e.g. closing her hand. Such an amplifying muscle group is needed in order for a recorder to sense the signals that would otherwise be too weak. The signals for different functions e.g. open the hand or turn the wrist, end up in different segments of the amplifying muscle. When the patient then thinks about opening her hand, the signal goes to the muscle segment it is attached to and the muscle contracts. This signal is read as a control input and results in that the motorized hand closes. In order to get the motorized hand to do the broad range of movements that a real hand does, multiple nerves have to be transferred (Kuiken et al. 2007:371).
A future hope expressed by Kuiken’s research group is that the technology of TR could result in the user getting a sense of feeling in the limb which he/she is missing. The hope stems from the idea that a signal can be sent back to the brain from the nerve endings. Three months after the surgery of the reinnervation the patient of the experiment reported that she felt sense of touch on her
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(ibid:377-8).
Figur 3 Map of areas that the patient perceived as distinctly different (Kuiken et al. 2007:378)
Based on the above mentioned, as the currently available prosthetics cannot fully restore the function of a limb, the above described technologies open new doors in the area of regaining motor ability for people with congenital or acquired limb deficiencies.
2.2 Organization of experts
Having described the different technologies, it is now time to discuss the perspectives of the experts, the way they are organized and the different actors they are in contact with. This will give us a broad view of how the working environment of this scientific community is structured and the different matters of concern to them. Further on, we will reflect upon this information and draw some of our own conclusions related to the expert culture and the ethical approach of our project.
In the following we will present the organizing of work in the field of neural prosthetics in the international research and training center Sensory for Motor Interaction, Aalborg.
SMI is an international research and training center working under Aalborg University at the
Department of Health Science and Technology at the Faculty of Medicine. SMI consists of many different laboratories and one of them is a unit called “Neural Engineering and Neurophysiology of
Movement”. Under this, there is a laboratory called “Neural Prosthesis Laboratory” that seeks to
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develop novel neural prosthetic applications for interfacing with the nervous system. They aim at creating artificial prosthetics that can be controlled by recording or stimulation of neural tissue
(that is directly in the brain or through readings of nerve signals through the muscles).
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Fig. 4. An illustration of the organization of the different units under SMI and where the“Neural
Prosthesis Laboratory” is situated
AAU
SMI
Integrative
Neuroscience
Pain and Motor Neural Engineering and
Systems Neurophysiology of Movement
Physical Activity and
Human Performance
Brain-
Comput Learning sticity er
Motor and
Neuropla Neurom Neural
Laboratory
Motor Unit and EMG
Human ion
Biological odulatio Interface Prostheses Physiology Locomot Ressource n
Neural s
Interfac Training es
On SMI’s webpage for the department of “Neural Prosthesis Laboratory” they state:
“Aim
The main aim of the NP lab is to develop novel neural prosthesis applications by interfacing the nervous system. Our focus areas include neural prosthesis applications for motor rehabilitation, artificial prosthesis control and development of new diagnostic tools based on electrophysiological
recording or stimulation of neural tissue.” (smi.hst.aau.dk 3)
The overall aim or goal of the department “Neural Prosthesis Laboratory” is laid out, but in order to fulfill this aim the unit has realized it is necessary to specify even more and divide into even smaller units:
1.
Transverse, multi-channel electrode system for treatment of phantom limb pain
2.
Intracortical BCI systems
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3.
Cortical sensory feedback of tactile information
4.
Animal models to study ischemic stroke and stroke therapies
(ibid).
Associate professors and PhD-students are working in these units together and individually, with
Winnie Jensen being the managing figure. As the headlines of the units imply, it seems like they are tackling the problem (to create neural prosthetics in interfacing the nervous system) from different angles. The first unit is about finding out more about phantom pain and what can be done to deal with it. This is one side of the problem that no prosthetics have been able to solve.
Another unit deals with the brain-computer-interface measuring inside the brains, particularly on animals at this stage of the research. The third one aims at getting a sensory feedback in order for the user to better control the movement or task he/she is doing. And the final unit deals with strokes in animals to get a better grasp on what happens before, during and after a stroke. They hope to contribute to converting this knowledge into saying something about strokes in the human body and how to deal with that in rehabilitation.
The key collaborators of the unit of SMI are the following, but we will not go into further detail with what their exact relationships with the Neural Prostheses Laboratory are:
Biomedical laboratory, Institute of Pathology, Aalborg Hospital
IUPUI, Dept. Biomedical Engineering and Aalborg University (Dr. Ken Yoshida)
Neurodan A/S and Otto Bock Health Care
Department for Microsystems Engineering (IMTEK), University of Freiburg
Laboratory of Informatics, Robotics, and Microelectronics (LIRMM), University of
Montpellier
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With the above description of SMI we have enough information that we can elaborate on and we can now move on to the next chapter. To acquire a greater picture of the relationships and the differences between the different actors, we will now describe the perspectives of the other actor that is of interest to us, namely the users.
2.3 The researchers and experts of SMI
SMI is researching in neuroscience and engineering with the goal of developing new diagnostic and therapeutic methods in the field of pain, motor control, sports sciences and rehabilitation
( smi.hst.aau.dk 4 ).
SMI’s work is interdisciplinary and it consists of researchers from very different fields. In addition to this, approximately 50 percent of the researchers are foreigners. This means that SMI contains a lot of different researchers with many different qualities, not only because of their different educational backgrounds, but also because of their cultural differences. In that way all researchers bring in something different to SMI (Interview with Winnie Jensen).
The group Winnie Jensen is head of, Neural Prosthesis Laboratory, investigates basic neuromuscular mechanisms, their functional consequences mediating both acute adjustments
(e.g., arousal, muscle fatigue, pain) and chronic adaption (e.g., aging, gender training, stroke, rehabilitation), and methods to restore, replace and modulate lost or impaired motor functions
( smi.hst.aau.dk
5).
The group of Neural Prosthesis Laboratory currently comprises two research assistant professors, three associate professors, one assistant professor and one professor on part time. Part of the group are also 12 PhD students (Interview with Winnie Jensen).
Winnie Jensen was our key contact to get more knowledge and better understanding of SMI and the way they work. We had the chance to interview Winnie as well as two PhD students, Imran
Khan Niazi and Sofyan Hammad, and get a tour in the different departments (e.g. labs) of SMI.
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2.3.1. Outcome of expert interview with associate professor Winnie Jensen
Prior to our visit we prepared an interview guide with questions aimed at clarifying some things about the research that is done at SMI in order to obtain a general impression of how people are organized within the research group. In the following section we will present a short resume of the interview with Winnie Jensen.
Winnie Jensen was educated in electrical engineering at Aalborg University and with her master’s degree specialized in the field of biomedical engineering. During her PhD she worked on implanted neural faces. Describing her line of work, she informed us that she is working with devices that can assist people who are disabled because of injury or damage of the nervous system, by making technologies that can help them overcome the disabilities that they have on the nervous center side or on the motor side (Interview with Winnie Jensen).
Winnie Jensen did both her master and PhD at Aalborg University. After doing one of her
Postdoc’s she returned to AAU to occupy a permanent position as associate professor. She is involved in several projects, among others can be mentioned: A project focusing on the peripheral nervous system, one on the spinal cord, one on the brain side, and a project that involves performing experiments on rats to suppress epileptic seizures (ibid).
Winnie Jensen developed an interest in the field of neural prosthetics and the development of interfaces during her PhD. Subsequently, she worked with testing technologies on animals, since it is necessary to do so before it’s possible to make trials on humans. The projects can take a long time and it can take years before they actually manage to get any successful results (ibid).
The common goal and working area of Winnie Jensen’s group are the neural prosthetic devices and the creation of a link between the knowledge produced with animal experiments and knowledge about humans. Working with animals is Winnie’s expertise, while one of the other associate professors works with patients. The group consists of people who have different qualities and knowledge that they try to bring together in their work (ibid).
It’s an interdisciplinary group, with a mix of people with different backgrounds, but the majority of the group has engineering or a partly technical background since the testing often requires a
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Group C. 17-12-2012 certain amount of technical knowledge. However, as Winnie Jensen maintains, this does not mean that it would be impossible to hire people with a non-technical background. The group also consists of one medical doctor, so it’s not only people with technical expertise. However, Winnie
Jensen also states that the group tries to design projects that fit the individual researcher, and so during the process of the project you pick up on the things or techniques where your knowledge was lacking (ibid).
Since approximately half of the staff of SMI is non-Danish there are, according to Winnie Jensen, some challenges about this situation, mainly on the cultural side because people are coming from very different cultures and often have very different working mentalities. But for Winnie Jensen it is not an unnatural situation, but rather a working condition at SMI. Also, she points out that especially for some of the foreign students, the problem-based-work model is a challenge, since they are not used to the professor making only very few proposals and suggestions about their projects (ibid).
A new possibility that comes with the foreign students is the establishment of a bridge to other countries and universities. More specific, Winnie Jensen is hoping that the Chinese students will help AAU establish more contact with China (ibid).
The physical structure of the group is often changing because of expansion, so it’s not always possible for all members of the group to be in the same building. Winnie Jensen says they are still pretty close to each other. She has an office for herself, but most of the PhD students share an office with another PhD student. According to Winnie it’s not mandatory for the kind of work they do that they are physically together every day and she claims that they don’t interact on a daily basis, because the group is too big for that, comprising about 20 people. With her students though, she is in contact several times a week (ibid).
The group has regular meetings, some are for making strategic decisions, and others are meetings with the entire group, including the PhD students. Winnie states that even though they are all quite different, they still have a certain mindset that is shared in the group (ibid).
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According to Winnie it works on two levels, a group level and an individual level. Winnie’s responsibility is to make a strategy for how to get funding. The way for a university to receive funding is by making publications, educating PhD students and teaching (ibid).
Winnie claims that there is a lot of competition in the field, and that people are not only doing science for the purpose of doing science, but they need to have a reason to justify what they are doing. What drives Winnie to do this line of work is the development of tools that can help people with disabilities (ibid).
“Strategisk Forskningsråd”, “Højteknologifonden”, and “Danmarks Grundforskningsfond” and several others are the places to apply for funding when having a specific research proposal (ibid).
2.4 The experiences and challenges of amputees and users of prosthetic devices
Having a normal looking and functioning body is what most people are born with. For the purposes of our project when we mention a “normal” functioning body we are referring to a body with all limbs and with full functionality. This means that bodies considered as “normal” are what we see all the time on the majority of the other people. Not being a part of this group with a
“normal” body puts people with amputations in another category. If you are lacking a limb it might be a goal to get as high functionality as possible. A prosthetic might be a possible solution for that, or at least an aid to reach that goal. Getting a prosthetic is not only about the technical part and the device; it is about the specific person who is getting his or her body attached to an external piece of technology.
In the following chapter we will try to touch upon some of those aspects that are part of getting a prosthetic.
The former master’s student Elisabeth Bomholt Østergaard from Denmark did in 2006 an anthropological fieldwork for her master thesis on a group of 9 people who all had a limb amputation and subsequently had to live with a prosthetic.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
We find it important for our project to look at the subject from a user’s point of view also, and not only from a theoretical angle and from the point of view of the experts at SMI. We find the user’s point of view interesting and important since they are the ones who are wearing and dealing with the prosthetic every day. Therefore, we think that by bringing in the users point of view, we might be aware of some perspectives that only they can inform us about.
Anthropological and psychological studies show that what amputated people expect from a prosthetic device varies. Getting a prosthetic arm is a life changing event that might have an impact on one’s thoughts and dreams for the future.
Accepting the new situation and the new body image takes time and is a difficult situation. For amputated people, first comes the traumatic experience of losing a limb. Then follows waiting for the ‘stump’ to be ready, for measurements to be taken and then comes the long process of creating a prosthetic. Once a prosthetic device is ready, the amputee has to go through a long period of rehabilitation (Østergaard 2006).
Things to consider are all the mental adjustments, issues of acceptance, ideas, thoughts, hopes and crises that come along the way when going through having a “normal functioning body” to losing a part of that body and to redefining one’s self in order to move on in life.
The user, Ellen (female, 67 years old) talks about how her former dreams and thoughts for the future changed when she got her leg amputated and had to live with a prosthetic (Østergaard
2006:13). Even though she was able to continue her job as a nurse and live in a two floor house she felt that she had many physical limitations. She had always hoped for the future to go travelling with her husband, but after the amputation she felt that she was too limited because of her leg and could not do that. It was not only physical limitations that were making life more difficult for Ellen, but also sedentary activities such as reading a book could be a challenge.
Because of phantom pain and irritation in the stump of her leg she felt disturbed (ibid).
Dreams and thoughts for the future change because of amputation, and that is mentioned several times by the users in Østergaards work. Erling, a 64 years old male says:
“Things have gone differently than we have imagined.” (ibid).
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Erling had in his mind always thought that he should help his children and grandchildren, but he felt limited in his freedom to do that.
Limitation in freedom is a cross cutting issue for the users in Østergaards work. Even though most of them have returned to their normal job (5 out of 9 returned to their job, the last 4 did not return because 3 have reached an age where they could retire, and 1 was still sick from work because of recovery after the amputation) (ibid), they still feel a limitation in fulfilling their former thoughts, hopes and dreams they had for the future. Especially travelling is mentioned several times as something they now see as very difficult. Having to travel for many hours to go from one place to another using transportation is what seems very hard.
What makes life difficult for an amputee, compared to the phase before the amputation, is the new state of the body. Before losing a limb, the users had no concerns in doing what they wanted.
But this change in their body has also changed their thoughts about themselves and what they think they are capable of. Lone, who always felt she was a strong independent woman, felt the opposite after the amputation, and 7 years later she finds it very difficult to ask for help. Her view of herself had changed (ibid).
As there are different issues that one could talk about concerning the users, the following subtopics will focus on more specific matters such as the amputee’s self-perception and others’ perception, the new life after amputation and the use of a prosthetic arm as well as patient organizations. By quoting and analyzing the personal experiences of the users we will track the psychological challenges they face in their lives.
2.4.1 Self-perception and others’ perception
Self-perception and other people’s perception of one individual is not always the same. The informants in Østergaard’s work talk about how they are more aware of other’s reaction after amputation and how their self-perception has changed.
Lone’s perception of herself as a woman changed when she got her leg amputated and had to wear a prosthetic. Further, she found herself faced with strong feelings when a person asked her if
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Group C. 17-12-2012 her husband still wanted her now that she wore a prosthetic (ibid). This is an example of how the reaction of others is a part of shaping the user’s new self-perception.
The reaction of children is mentioned by several of the informants. The immediate and wondering way children can ask questions and show interest is described as very liberating. One of the informants was asked by her grandchild shortly after the amputation if the child could take a look at the leg. After that the child bragged about her grandmother’s “cool leg” (ibid:23). This reaction had a big impact on the informant’s self-perception, and helped her have a more positive perception of her “new self” (ibid: 24).
The reaction from adults can have a more negative impact because they can be more judging. Also if they try to joke about it, it can be very disturbing (ibid: 23). Birgitte who loves to dance, prefers to do it at home where no one can see her. She wants to avoid comments such as: “You almost can’t see it” (that she is wearing a prosthetic) and “You can do it!” (ibid).
Lone clarifies that she hasn’t met anyone who thinks she is different. On the contrary some people have wondered why she needed to work fewer hours, because they didn’t really notice a change about her. These comments surprised Lone, because she had the idea that they would think it was impossible for her to even work at all (ibid:25).
This shows that Lone believed that people would look at her and think of her in a negative way. It turned out that people had a whole different perception of her and it hadn’t changed even though she had her leg amputated and had to wear a prosthetic.
2.4.2 The new life with a new body part
According to the British author and political activist Craig Murray, it seems that there are different factors that determine how an amputee will respond to a life with a prosthetic arm. After a period of mourning for the lost limb and adjustment to the prosthetic one, users have to adjust to their new body image before they can accept that this is going to be their new reality and before they can inform others about the new part of themselves. Denial, inability and false expectations for the outcome can be reasons for rejecting the artificial arm. On the other hand, a functional and
27
comfortable prosthetic that can be used for various tasks and activities, is certainly a more preferable option (Murray 2009:574).
Our body is part of our daily life and it is therefore involved in traditions and customs. Rituals such as wearing a wedding ring, hugging a person etc. can form our self-identity and how we present ourselves to society (ibid). Both these mentioned rituals are something that include one’s body, and if you don’t have a good and healthy relationship to your body it can be painful and difficult for the person to include him or herself in situations where focus is on the body. The image of the body constructs the image of one’ self and can be the basis for most life experiences. People change though throughout their lives and so will their attitudes towards the world. If an amputee feels that prostheses will enable him/her in daily life then there are more chances the person will accept the prosthetic arm as a part of one’s self. If it is felt that it is preventing the person from doing certain activities, then the prosthetic will be viewed as disabling and can be rejected.
(Desmond & Maclachlan 2002:186)
When it comes to the issue of body image and cosmetics, a lot of users claim that getting a prosthetic was the way to go back to their lives and old activities, to construct human interactions and relationships. For example, being able to return back to work is crucial to make the amputee feel equal to everyone else rather than different and disabled. More specific, the user called GR-EI claimed:
“My physical therapist said yesterday that I can start wearing the prosthesis 8 hours a day. This means that I will be able to wear it [and go back] to work. It is a big, a really big step along the
road to recovery.” (Murray 2009:576-7)
Patrick Kane is a teenager who lost an arm and a leg after a meningitis-related health issue. When he talks about his prosthetic arm he claims that he is now more independent, more able to do intricate things and even use his hand to perform hot experiments in chemistry class at school. He views his arm as a mean of empowerment ( bbc.co.uk
).
As Murray claims, users tend to fall into two categories when coping with an artificial arm. For some users it is important that aesthetically it looks like a real arm even if it means they have to settle for a passive one. Appearing bodily complete is their prime target. This is a tendency that
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Group C. 17-12-2012 concerns mostly women who strategically dress themselves in order to feel feminine and look elegant. (Murray 2009: 577)
The second category includes users who appreciate functionality and perceive cosmetics as irrelevant and as a result of feeling embarrassed or being in denial. They do not want to succumb to the social pressure of looking normal, looking the same as everybody else, and they wish to challenge this prejudice and stigmatization. They attribute a political aspect to the matter and question notions of disability. As this leg amputee states:
‘Awareness of the prosthesis: a tool which I USE, not wear. As my small effort to forward the cause
of disability awareness I am always dressed in shorts, everywhere.’ [user mentioned with the name
GB-EI] (Murray 2009:577-8).
Important values for a user can be generally described as the accomplishment of practical things, the preservation of his/her abilities and the control over personal information (ibid: 580).
2.4.3 Psychological issues – the process of getting an artificial body part
There can be several reasons why a person needs a prosthetic. Maybe you are born missing a limb, or maybe you have been in an accident where you lost a limb, or maybe because of sickness or an accident something has happened to one of your limbs so it needs to be amputated. All these different scenarios can happen to different persons and at different times of their lives. In this point it should be made clear that users are not alike. Their age, sex, personalities, reasons for getting the prosthetic, experiences, expectations, family and more, play a role in how the person will deal with the new part of their body.
For example, a person who is born without one arm doesn’t know what it feels like to have two arms as this person has not experienced daily life with two full functional upper limbs. A person involved in an accident that causes a traumatic injury which leads to the loss of a body part, will most probably feel a great loss. Other circumstances can also play a role; the loss of a friend or family member during the mentioned accident can make the situation even more traumatic. That could have consequences for how the person would deal with a possible prosthetic. Also, there
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can be differences in how a young person and an elderly person would deal with such a situation.
We are aware of the differences in users, and know that not all users will handle things the same way. We will take a look at what issues can play a role in the process of a person receiving a prosthetic.
Prosthetics can improve the quality of life and the mental health of an amputee, but the psychological issues that derive mainly from the amputation can affect the physical rehabilitation and acceptance of a prosthetic limb.
The alteration of the body image can be striking for a person’s psychology and defining for how society looks upon the person. Coping with amputation, adjusting to the new situation and accepting a new way of living can be a long process. As mentioned, the reason for the amputation and the meaning of it can be different for different age groups. Usually, a traumatic injury of a young person can lead to feelings of losing opportunities in life, whereas amputation for medical reasons of a body part of an elderly person could mean relief from pain (Desmond & Maclachlan
2002:186).
Concerning the role of the experts in the above discussed issues, the following quote by Desmond and Maclachlan describes some notions that seem to be missing in the typical way of working of the professionals:
“Health professionals should be aware of the potential importance of an amputee's 'relationship' to their prosthesis as a psychically invested aspect or extension of self, and its potential to symbolize how they relate to the world. Given that changes in bodily functioning and appearance are a feature of health as well as illness and/or disability, and are often considered 'normal'
consequences of ageing, this relationship may change and fluctuate throughout the lifespan.”
(Desmond & Maclachlan 2002:186)
Patients value the knowledge and experience of the experts as trustworthy. Apart from this, it is of great importance to them to contact people who have already been through this situation and hence, can assist them in making a responsible decision. Patients have expressed their need to receive as much information as they can before the surgery for amputation in order to gain insight
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Group C. 17-12-2012 and hope for the future. It might be useful if there was a database within the world of health and medicine that would provide all this information (Hamill, Carson, Dorahy, 2010:734, 737).
According to some theories, there are three themes related to the psychological complexities that we analyze. Those are the “pre-amputation decision making and control”, “the renegotiation of self-identity and the struggle to accept a new ‘disabled’ identity”, but also “adjustment as a social process” (ibid: 729).
Some of the most common difficulties the patients face are phantom limb pain and residual limb
pain. There is ample evidence that links them to psychological and social adjustment. (ibid) As mentioned earlier, another hardship that these people face is the way society and more specifically friends and family treat them. Here is an example of such a situation:
“When I came out of hospital the family and my husband and daughter were...very ‘suffocating’ is the word I would use. I mean, put locks on the doors and put locks on the windows in case anybody would come in and mug me when I was there on my own. I’ve lost a limb, I haven’t lost my mind!”
(Clare) (ibid: 735).
Getting a prosthetic is not only a challenging change for the person who is getting it, but also for the family members and the people who are part of the patient’s life. Especially because seeing a person that you love in pain can be devastating, so you might try to do what you can to help and protect the person against more pain. As the above quote illustrates, this help and protection can be misunderstood since the person still has a lot of functionality and can feel bad when being treated like he/she is not capable of taking care of himself/herself. For this reason it is also stressed that family members should be informed about the appropriate behavior since there seems to be a gap between what the amputee perceives as helpful and what others consider as supportive (ibid:738).
Men often feel insecure about fulfilling their gender roles and are worried about the levels of their masculinity and attractiveness
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“You think you’re less of a man. You can’t provide the same; you’re not bringing in a wage now.
You’re not the earner, the provider, you’re depending on benefits and stuff which I suppose is a big thing too.” (Roy) (ibid: 735)
According to some amputees, a way of adjusting and coping with the new situation can result in finding comfort in bad habits such as smoking. According to others, an effective method is to compare themselves with other amputees and see that “things could be worse” or that they are not the only people dealing with this situation. Thoughts such as how things were decades ago and how much they have improved today, is also described as a way to provide hope and positive attitude. (ibid: 736)
Another psychological challenge of the patients is the depression they feel from being under pressure to hide their feelings and personal struggles. They want to avoid wearing others with their problems so as not to provoke negative feelings and run the risk of losing contact with them.
“I felt that once you came out of hospital you were on your own. There was nobody to talk to, and when you did go out you tried to talk about everything other because you feel you’re being a whinge. People don’t want to listen to you whinge, ‘I’ve no leg, I’ve no this, I’ve not the other.’ I
wouldn’t want to listen to anybody like that.” (Clare) (ibid: 737).
The feeling of loneliness can be intense, since it is only that specific person that can deal with his new prosthetic, getting to know how to live with it, accepting it, learning how to use it, and dealing with all the little issues every day. Even though there are doctors, nurses, physical therapy and maybe a psychologist to help the patient, it is a long and difficult process that the amputee has to go through.
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Group C. 17-12-2012
3 Anthropological approaches – about going from being stigmatized to reintegration in society with a new limb and a new social identity
In order to conduct a techno-anthropological research of neural prosthetics it was important to choose anthropological theories that provide a framework for understanding the social processes on this topic of research. In the upcoming parts we describe the ideas behind the theories we use and we then analyze and reflect them on the expert culture, the users of prosthetic devices and the society. Our anthropological approach includes the following three theories; Social stigma by
Erving Goffman, Rites-of-passage by Victor Turner and Actor-Network theory (ANT) by Bruno
Latour.
3.1 Theory about the stigma of people with limb-loss and users of neural prosthetics
In the following we will use “Stigma: Notes on the Management of Spoiled Identity”, a theoretical book by Erving Goffman to describe which ideas he has towards stigmatization in society. With the use of Erving Goffman´s idea of social stigma we will try to shed light on the various social processes involved in stigma, towards individuals lacking a limb. We will also try to describe the mechanisms driving persons towards having prosthetics, and which social consequences this may have on them.
Goffman talks of how we perceive strangers when they come to our presence for the first time.
With their appearance we categorize and attribute their social identity (Goffman 1963:12). He states that attributes possessed by a person who differs from other categories of people, and that the person that possesses bad, dangerous or weak attributes, will in other people’s minds be reduced, from a whole and usual person to a discounted one. And that is an attribute which he refers to as a stigma (Goffman 1963:12). An attribute is a visible or non-visible characteristic relative to the perceived stereotype. Attributes in the sense that Goffman uses them, are
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perceived as being outside the attributes expected for a person in a social anticipated category
(De Paoli 2004:5). In other words, an attribute could be a feature that is different from the expectations of the majority of the society that derive from a stereotype. He therefore claims that instead of seeing stigma as a reference to an attribute, it should be seen as a language of relationship (Goffman 1963:13). He talks about the main point of stigma as being the gap or
disappointment between perceived attributes and stereotypes, or in another way he sees stigma as being the relation between attribute and stereotypes (De Paoli 2004:4).
Goffman identifies three types of stigma (Goffman 1963:14):
1) Abominations of the body or physical deformities
2) Mental disorder, imprisonment, alcoholism, homosexuality, unemployment or other deferring attributes
3) Tribal stigma of race, nation and religion
He believes that by constructing stigma theories and ideologies, we exercise various kinds of discriminative acts against people with a stigma. We use them to explain their inferiority and account for the danger they represent. We give these individuals specific stigma terms or names such as “cripple”, “bastard”, ”moron” (ibid). In this way we unintentionally and often without giving it a thought, reduce their chances in life.
Being in the category of a stigmatized person can have severe consequences. The person can begin to feel ashamed of his attributes, and his perception of himself can reinforce the belief of the claims presented towards his attributes (ibid:18). Goffman gives an example of this by describing the feelings of a man who has a problem with his legs, without giving any further information about what exact problem that is.
“I didn't scream with rage when I saw myself. I just felt numb. That person in the mirror couldn't be me. I felt inside like a healthy, ordinary, lucky person - oh, not like the one in the mirror! Yet when I turned my face to the mirror there were my own eyes looking back, hot with shame……They left me dazed and dumb and senseless every time, until slowly and stubbornly my robust persistent illusion
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Group C. 17-12-2012 of well-being and of personal beauty spread all through me again, and I forgot the irrelevant
reality and was all unprepared and vulnerable again” (ibid: 18-19).
Goffman gives here an example of an individual looking at himself, and reflecting on what he sees and feels. This portrays the process that the stigmatized individual goes through. He starts to be in denial of his attributes and his virtual identity differs from what he perceives as being his identity.
Slowly, the stigmatized individual goes through an “illusion” of personal beauty and well-being, which makes him/her forget and neglect his/hers abnormal attributes. This leads to an acceptance of the current state of reality.
This though can make the stigmatized person wanting to correct his attributes. The individual will consequently try to correct the abnormalities by physically removing them. This can be done by surgery if the individual has physical deformations or by therapy of any kind, if the person suffers from mental disorder (ibid: 19). Goffman argues that a person can use this physical abnormality or disability as an unconsciously important social and emotional adjustment to connect all of the inadequacies, all dissatisfactions and all unpleasant duties of social life. The person will become dependent not only as an escape from competition but as protection from social responsibility
(ibid: 21). By removing the stigmatizing factor, the person will drift away from the emotional protection that the stigmatizing factor has offered and will soon realize that life without these abnormal attributes can bring forth new obstacles and changes that he/she will not be able to cope with (ibid).
The stigmatized person can also try to correct the attribute indirectly by devoting himself/herself to mastering a specific discipline, which in the eyes of society is perceived as unlikely to be actualized. Goffman gives us examples of various individuals which manage to indirectly do this, such as the paralyzed person who learns how to swim, play tennis or do other kinds of physical disciplines. According to what he says, persons can distance themselves from what is perceived as reality, and bring forth a new interpretation of their social identity as perceived by society (ibid:
20-21).
Goffman also refers to the possibility of stigmatized individuals failing to live up to the demands that are on them and at the same time remain relatively untouched by this failure. Goffman
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emphasizes that these individuals are protected by their own identity belief and may feel they are the “normal ones”, with all others standing in opposition to them as the non-humans. These examples we find in various religious and enclosed social groups (ibid: 17).
Having described this theory, we can now use the different notions and make a relevant analysis.
3.1.1 Stigmatization of amputees
At this point we are able to reflect on Goffman’s definitions and description of social stigma from the society’s and the stigmatized person’s viewpoints, and use his theory for our specific case. We can implement Goffman’s thoughts towards the views directed on people lacking a limb.
People with amputations can be categorized in Goffman’s first category of social stigma, which in this case is physical deformation. From the society’s point of view, people missing a limb will be categorized as people with physical deformations and that counts for people born with this abnormality, as well as for people that have been struck by a disease or had an accident that resulted it this deform attribute. We may also realize that society has a tendency to put people with all kinds of deformities in one big category, namely the category called disabled. Society uses this word to categorize people with disabilities or people with capabilities that are in the shadow of what could be called “normal”. People within this category will not be able to function in society without any help and as Goffman states, in the eyes of an individual they can be seen as
“less of humans”. This is perfectly seen in how our society has the tendency to thoroughly teach our children not to stare at people with disabilities or speak badly about them. Some societies use many resources in optimizing our buildings, transportation systems and parts of our infrastructure to meet the obstacles that disabled people physically meet in their everyday life. So it seems that society gives them economical help to live and acquire technologies that can help them in their daily life. In that sense society tries to embrace them, and help them through their life, by accepting them and their special needs. That can be seen as an ethical obligation in society. In some way we want to make them free or liberate them.
But it is one thing how society approaches them, and another thing how individuals approach them. Society doesn’t view them as “normal” people. In broad terms, they are not as “normal”
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Group C. 17-12-2012 people are, free and fully independent. They need other people to help them out with the challenges of a daily life. The surrounding people empathize with them and are very aware and cautious of how they talk about them in open forums. Disabled people are almost always portrayed as unlucky individuals that in some cases are managing to live a “normal” life, taking their disability into account. Oftentimes media tend to portray disabled people being able to do things one wouldn’t believe they could. As Goffman tells us it can be a person with one arm or leg running a marathon, or a paralyzed person learning a sport discipline. So the relationship between disabled and non-disabled people is somewhat distanced.
This non acceptance of disabled people as fully human beings can have severe consequences on these people. They can feel stigmatized and as outcasts in society. This can lead to confinement and in some cases psychological disorders that lead to a bad quality of life. Some stigmatized people, as Goffman argues, will try to correct their attributes. That can be done by trying to correct the abnormalities. One way to do this would be with surgery. In the case of people with a missing limb, they will compensate for that by getting an artificial limb. This is a prosthetic which can be an intelligent or non-intelligent.
We can distinguish between two different kinds of people wanting a neural prosthetic. There is the person that is born with a missing limb, and the person that in some occasion has lost one. The two different individuals may perceive their situation in different means. From society’s point of view they may both be seen and categorized in the same way. So for the disabled individual it may seem as a necessity to change or acquire some kind of technology that can change his/her appearance, or make him/her less reliant on other people by obtaining full functional ability to overcome the daily hardships. The necessity for the disabled to acquire a neural prosthetic can also come from the need to “fit in” society. Either it is a person that has lost a limb as a grown person and wants to “fit in” again, or it can be a desire for a person that was born with the disability to try to “fit in”. In other occasions it can be a clear necessity for the person to break through the stigmatized role that surrounds him/her. They don´t just want to “fit in”, but it can be a clear need for their psychological well-being, that they acquire this technology. In other means there are stigmatized people as Goffman categorized them, that are relatively untouched by their disability. Goffman emphasized that they can be protected by their own identity perception, and
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feel they are as normal as other’s. In that case the acquiring of a neural prosthetic would be the way for them to function with no help, and to live in full freedom without the reliability on others.
The natural question would then emerge. How would society categorize these individuals? Neural prosthetics implemented in humans, are in some sense a hybridization that can be categorized in a new way. It’s neither human-like nor machine-like but a mix of the two. People acquiring a neural prosthetic can then end up in a new category. A category usually used in science fiction movies.
That hybridization of humans and machines is called “cyborgs”. That can in some sense alienate the individuals from society on a larger scale, and not just make them less humans, but no humans. For the first category of people who want the neural prosthetic as a way to “fit in”, this can be devastating. If individuals acquire the technology to break through the stigmatization barrier, then they could indeed suffer from other stigmatizations. On the other hand, if the individuals are confident in their own identity, they could in no way be mentally harmed by using this technology. Society could as last also categorize these individuals as “special phenomena’s”.
That in a positive sense are embraced in society as abnormal, but looked upon with great interest and satisfaction. They become great examples of what humans have achieved in technological development, and from that they can become individuals with high status in society.
People acquiring a neural prosthetic can also have a problem in categorizing themselves. They can go through an identity crisis. Goffman gave us the example of the person looking at himself in the mirror, and going through a process by looking and reflecting on what he sees and feels. This process is described for persons that have abnormal attributes. It’s a process that could also happen for people trying to correct their abnormal attributes, by acquiring a neural prosthesis.
The neural prosthetic could also be seen as a new abnormality after implementation in the case that it’s not fully accepted by the user and the society.
Having described, analyzed and reflected on Goffman’s theory about stigmatization we now proceed to the second anthropological approach of our project “Rites of Passage”.
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Group C. 17-12-2012
3.2 Rites of passage
The concept of rites of passage originally emerged from studies made by the French anthropologist Arnold van Gennep in 1909. Later, it was further developed by Victor Turner.
Rites of passage is a social theory about the, in many contexts, noticeable rituals that mark the transitional phase from one place in life to another. Rites of passage are rituals, or rather events in recent times, which lay the basis for a person’s new transformation. The rituals or events are used when a person goes through a change, a crisis or through general changes of status. Rites of passage are in other words connected to the change of a social status in life, when the person reaches a new place in life (Turner 1974:127).
In relation to our project about neural prosthetics and the users of these technologies, we find the theory of rites of passage beneficial to enlighten our understanding of what kind of physical but also social transformation amputees go through. By looking at the different phases that the person goes through as a series of ritual steps in different phases, the adjusting to the prosthetic being the greatest, we hope to create a more qualitative and in depth view upon what it means to get an artificial limb, and what difference it makes using an exact prosthetic.
In order to make an analysis on this, we will first present a thorough theoretical framework of rites of passage and then look into how to place the issue of the future users, of the developing neural prosthetics, in this framework. We will focus on the difference in terms of the persons with missing limbs because it seems like they change in relation to the context they are in. It is our hope that an investigation of what the person is called at different times, can result in an analytical answer to what changes the person’s experience, and what the society experiences when he/she goes from missing an arm to having a robot arm.
Again we must make it clear, that the specific technology is not a commonly used treatment, because it is still in its infancy, but we find it important to approach the issue either way in order to research what the obstacles might be, pitfalls and dangers of establishing the technology as a solution for these people. This means that by making an analysis we can only make suggestions based on our own understandings and ideas about how the future will be in this area. However,
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the process of people getting a prosthetic in general has been analyzed by several social studies, many also drawing on the theory of rites of passage (e.g. Østergaard 2006). With this in mind, we find it useful to analyze what happens with people that go through the process of replacing a lost body part. In addition to this there will be a theoretical discussion on that the exact technology used will mean a great deal on how the person is viewed in the end in societal context. We do this by looking at how the media already today term the few people that have agreed to be the first ones to let their bodies be the object of experimenting with this new technology.
But, as stated, we will start out with a theoretical framework.
3.2.1 Introduction to the theory Rites of Passage
Many studies of the phenomenon of change of social status in 1900 were made in societies that were not considered a part of modern society, but societies that were viewed as primitive. Even though these studies are most clear in the traditional societies, they are still a big part of the modern one’s. Events characterized as rites of passage used in western society are e.g. ritualization of birth, childhood to adulthood and death. These are clear and traditional rites of passage, but the term can also be used in other less frequent situations where a person is exposed to a major change in life, which could lead to a life or identity crisis, e.g. going from being married to being divorced or from sick to healthy. To recognize a situation as a rite of passage, some specific elements characterize the situation. It has to be recognized by society with three apparent phases; a phase of separation, a liminal phase and a reintegration phase (Turner 1974).
On a general level there are two different kinds of rituals, life-cycle rituals and calendrical or
seasonal rituals. Calendrical or seasonal rituals are mainly in connection to agricultural work and events happening in connection to the calendar, for example Christmas, New Year and other annually repeated events.
We will mainly work with the life-cycle rituals since we find these rituals most relevant for our work with neural prosthetics. Also, a rite of passage for the individual subject is a one-time affair, whereas a calendrical ritual is repeated every year.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
In his essay, Turner refers to Van Genneps theory of rite de passage.
Van Gennep distinguishes, as mentioned, between three phases in rite of passage: Separation, transition/liminal and incorporation/reintegration (Turner 1974:127).
In the first phase, which is the separation phase, the person is withdrawn from the current status in life and is prepared to go from one place and status to a new one. The separation phase is often associated with sacred space and time. This phase includes symbolic behavior, especially symbols that show the detachment of the person (ibid).
The second phase is the intervening phase of transition called margin the liminal phase by van
Gennep. In this phase the person is going through a period where he or she is not in the old and known place of life but neither in the subsequent place. It would be said that he/she is in between place and space (ibid: 127-128). Liminality is the phase you find yourself in after you leave one part of life but still haven’t reached the new stage. This is a temporary state where anti-structure rules. This means that in the liminality phase, between the phase you just left and the next phase you will reach, it is not the same social structures, rules, norms and statuses that are a part of this phase.
“In liminality, profane social relations may be discontinued, former rights and obligations are
suspended, and the social order may seem to have been turned upside down.” (Turner, 1974: 130).
According to Turner, in liminality chaos is ruling, in contrast to the previous place and the future place. Many societies consider or imagine the liminality to be dark, invisible, like a planet in eclipse or the moon between phases (Turner, 1974, p. 129). As mentioned, the liminality is a temporary place, and not a place that is desirable. The goal is to reach the next place, a more stable place, where you can find your new status rather than this place in between where your status is undefined since your old status is deleted and you still haven’t reached the new one. Being unable to reintegrate and thereby make an end to the liminal phase can be termed as being caught in a limbo. In the liminality phase, social structure is in the danger zone. The liminality phase can inhibit the social satisfaction of a person, and be a root for insecurity. Turner states that liminality may be the scene of disease, despair, death, suicide or breakdown (ibid: 150). Turner assimilates it with the hostile death and the vengeful spirits of strangers in tribal societies, stating that liminality
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is more destructive and creative than the structural norm. The liminality phase is furthermore described as “an extreme situation” (ibid).To be in a phase where you are missing a limb, and waiting to get it replaced by a robotic arm would be characterized as an extreme situation.
An extreme situation is characterized by circumstances that are beyond the normal routine and may involve risk and uncertainty.
The third phase is called re-aggregation/reintegration or incorporation. When the person has reached the incorporation phase, this place will be a more stable and defined position in life and society. Often, in connection to this third phase there are symbolic phenomena and actions that clarify the person’s new position in life and in the society (ibid: 128).
The three phases in van Gennep’s schema vary in length and degree, and are dependent on the specific person and situation. The transition phase will e.g. play a big role in the interplay with others, pregnancy and betrothal, where in the ritual of death, perhaps the transition role will not play such a big role. As a person can die very suddenly, the phase of transition might not be possible at all.
According to Turner, the passage from one social status to another in a traditional society is often accompanied by a parallel passage in space; a physical and geographical movement that emphasizes the individual’s new status in life. This means that the passage could include a specific journey before reaching the goal (ibid: 128). Marriage as an example of a very traditional rite could include that one or both persons had to geographical move away from their current society and into another where they were supposed to live together with their new spouse. In that way, the geographical movement would be a part of the passage that the person would have to go through before reaching the goal. In general, Turner points at a tendency to mark the separation phase as an event that takes the person out of the usual society, puts him/her into a place of danger, chaos and trials, followed by a reintegration that puts the person back into the same society but as a changed person. The rites must be seen as a kind of demand from society that lies upon the person. It can be both outspoken with actual leaders demanding it (as in small indigenous societies) or as an underlying norm in society (as in western society with e.g. confirmation).
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
3.2.2 Analysis of rites of passage and users of neural prosthetics – reintegration as a cyborg?
The point we aim at reaching by a Turner inspired analysis of the users’ social status is that they go through different phases when going from being an amputee to a person with a neural prosthetic.
Our analytical conclusion will be that the user gets more than a new artificial limb; he/she gets a new social status and identity. This is important to pay attention to in order to get a grasp on the expert culture because the actual middle phase (the liminal phase) is where the experts enters the picture and turns everything upside down for the user. When we see how the process influences the patients we can see the importance of how the expert culture handles the process of development of this new technology. The liminal phase has a great influence on how the user will be reintegrated in society afterwards as a changed person in a new category.
Different terms for the people with missing limbs in different phases of the process of getting a neural prosthetic
This project is about a very new technology so amputees getting a neural prosthetic are not seen often, only in relation to experiments with the technology ( smi.hst.aau.dk
6). However, the history of development of prosthetics throughout time has, as we laid out in the beginning, been long and therefore we draw on the tendencies we have seen with amputees taking action in order to get a solution for their incapability. Even though the technology is new, the tendency of the amputees to try to manage their lack of a limb, situation and social status we rely on to be the same. So even though we haven’t had the chance of getting data about users wanting this specific technology, we feel confident enough to approach the process the same way as if it was one of the former prosthetic technologies.
It is striking how many different terms or labels are used for people that are missing a limb. We will now try to dig deeper into these terms and investigate when each term is used, what they imply and what it says about the phases that people of our interest are going through.
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Throughout the description of common experiences of being a person missing a limb and the individual differences there might be, we have used different names for these people; “an amputee”, “a person with a missing limb”. We observe the use of these terms from online data, from the media and from different articles. We could add to these terms the term “disabled”.
When the people lacking a limb consider getting a neural prosthetic, they enter the phase of separation. There will be a period of time where the person is missing a limb, but still hasn’t gone through the operation of receiving the prosthetic. In this period the person will be in a waiting position to get started on the new chapter of life. Life as it used to be is over, but the future is still unknown and perhaps intimidating. When the future user is then getting prepared for the prosthetic by measuring, meeting with the experts and preparing for operations, he/she enters the liminal phase. This is a chaotic and an anti-structured place.
When we have then laid out the more scientific context where experts focus on implementing different technologies, including BCI and neural prosthetics, in people with missing limbs, the terms change. Now they are called “the patient” or “the woman with a proximal amputation” and it is in general different body parts and systems that are mentioned rather than any personrelated terms (Kuiken et al. 2007:371). In a sense, the person gets objectified when entering the scene of the experts. Even if the person is not going to get a neural prosthetic but a “simpler” one and goes to a truss to get one for aesthetics he/she is to some extend objectified and regarded to be a “patient” or a “user” ( sahva.dk
).
When the person has finally gotten a prosthetic to replace the missing limb, and in this case our interest is in that the replacement is a neural prosthetic, how is the person then referred to in a general sense? Of course, what the person is called depends on the situation but in the areas that have to do with the fact that the person has now a different looking limb is now termed either
“bionic man” ( cbsnews.com
), “cyborg” ( etiskraad.dk
), or simply their name followed by a story of their crisis and their improvement of life with this new technology ( natgeo.dk
).
The change of social identity through phases of going from missing a limb to using a neural prosthetic
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
The person goes from being characterized by his/her missing limb as “an amputee” where he/she is stigmatized by the surrounding society, to a phase of not just being an amputee but a “patient”, that is in a phase of being transformed. To follow Turners terminology the person starts out from one point where there is a term for what he/she is, an amputee or a disabled person. The separation phase begins when the person is separating him/herself from this category of society by seeking change through the experts. As described, Turners characterization of this phase is about withdrawing oneself and it’s about sacred time and space. The person is being prepared for the change, and this might be through individual research about the prosthetics and the process of getting one. A lot of steps are required before the actual work on the prosthetic can take place.
The amputee will discuss thoughts in some cases, hopes and fears with the spouse, family, patient organization etc. (see the part about users). He/she has to apply for it and maybe invest in it. The time of imagining oneself to be in another and improved situation can be viewed as an abnormal state of mind, and in Turners terminology as a sacred time and space where the realities of the life of the present is set aside in favor of a “fantasy”.
When the patient goes into a program of surgeries, fittings, exercises and rehabilitation it seems reasonable to regard this period of time as the liminal phase; the person is no longer a disabled person that lives a routinized life with the help he/she would need for getting by. He/she isn’t either a person with an artificial limb that improves his/her abilities (even though the person might still have some kind of less advanced prosthetic that he/she had also before). The person is now in between. He/she has to go to the place of developing these prosthetics all the time, get surgical operations and try to fit the prosthetic to the body and the body to the prosthetic. The period of time might be long and troublesome for the person and include physical pain, like in the rituals of primitive cultures e.g. circumcision (Turner 1983:127). It is also mentally hard to live up to all the expectations, e.g. physical training, and the hopes of a satisfying end result.
When the prosthetic in the end is a reality the person is changed according to Turners theoretical terms. Trials and challenges have been overcome and the neural prosthetic is not something to wear in order to look normal, as before, but something to use as one user stated (see part about users). Something has now changed and the person is not the same and will not fall into his/her former role in society.
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As mentioned before in this project, the technology is so new that we don’t know yet how these people will be characterized and termed in western society. We can however come up with some suggestions. The pity that the stigmatization of amputees creates might change or simply be replaced with other perceptions for the person. The neural prosthetic works as a new symbol, as a mark of initiation in van Genneps terms. Instead of wearing a non-functional artificial look-alike arm that is trying to appear as something it is not, the person is wearing an actively working and usable technological device that functions in the same basic principles of an arm. It might give the impression that it is what it appears to be as in opposition to the aesthetic prosthetics.
A suggestion on how to term these changed people has already been given through media description on the few experiments that have been carried out; “cyborg” (etiskraad.dk), “part man
– part machine” ( npr.org
), “bionic man” ( news.yahoo.com
). So what does this mean for the way society incorporates the person after he/she has gone through all these trials, challenges, modifications, hopes, fears, investments, pain and suffering? Our suggestion is that what started out as being perceived as a person lacking something, a “broken” individual, went through a series of trials and came out as an empowered individual. The person has deliberated him/herself from the victimization that we heard about earlier (in the part about users) and proved his/her willingness to go on and make him/herself less dependent.
The stigmatization from society as an amputee being helpless and maybe even a burden in some sense has been overcome by the hard challenges and rituals (the constant rehabilitation, operations, fittings etc.) that have been surmounted. To follow up on the theory of Turner the person becomes reintegrated in society with new possibilities instead of limits. The new status he/she gets is defined by the traces or marks left on his/her body throughout the liminal phase, just as the case in Turners primitive cultures, which we earlier touched upon, when e.g. adolescent boys gets their foreskin removed or get tattoos in African cultures as a mark of initiation (Turner
1983:127). The person is now marked with a neural prosthetic, and this obvious trade that is not made to look like an organic arm (in the cases we have looked at online), gets part of the characterization of the person. Therefore we have the terms bionic man, cyborg etc.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
3.2.3 Definition of cyborg and discussion of neural prosthetic users’ place in society
In order to get at clear definition of the term cyborg we will draw on the work of the American professor Donna Haraway, a pioneer and expert in the area of Social Studies of Science. She notices that the term has a great role to play both in the fictional world and in the real social world. The term expresses a merge between cybernetic and an organic part, “… a hybrid of machine and organism, a creature of social reality as well as a creature of fiction.” (Haraway
1991:149). An extension or more analytically reflected point of view on the perception of the merges of people and technology is given by Associate Professor Rikke Schubart from the
University of Southern Denmark. She states that rather than looking on these technologies, cyborgs and robots, as machines we see them as shadows of ourselves when we see them in their ultimate picture in e.g. science fiction films. ( etiskraad.dk
). Even though the term cyborg is related to the world of fiction, robots and great improvements/enhancement of the human body, the term turns up when dealing with new technologies such as NP. The link and reason behind this might just be the fact that it is about the border between where does the human body end and the robot arm begin. So when the public debate uses term like cyborg it might be an expression of lack of better words. It seems that a perfect word for this middle category (people that uses a technology as a limb) is hard to characterize and lacks a term. Even though ‘cyborg’ implies human enhancement it might be used as meaning “just” an enhancement of the amputees’ abilities. A wider and longer investigation of the different uses and discussions about the term can be done; the question of whether we could all be termed as cyborgs in western society with our daily use of bodily interaction and merging with technological device such as medicine, glasses, pacemakers and even clothes (ibid:150). We will however leave this discussion standing, in that it is not our aim in this project to discuss the term more in depth than noticing that it is used also in the case of
NP. Here we are, however, more interested not in what intellectuals and experts in scientific definitions think, but what the social society in general sees/identifies and how this effects the social status and identity of the person with a neural prosthetic.
As we laid out in the part about stigmatization it is the visual, abnormal marks on the human body that makes people categorize and approach others in a certain way. Because this technology is in
47
its infant phase we have to imagine, instead of observing, the scenario of a person with a robotic arm passing by ‘normal’ people of the street, in order to get an idea of what kind of social identity the person will take. Our suggestion is that a new category emerge where the person is seen as a former disabled person that has shown a great extend of courage, independence and investment in own capabilities. The surrounding individuals might acknowledge this as beneficial for the common good of society; that the person show activeness and not hopelessness. That the persons using the technology will in daily life be termed cyborgs is probably doubtful as it becomes (or rather if it becomes) a wider known phenomenon. The story (rites of passage-story) of the person might to a greater extend be what is drawn attention to by this robot arm. The robot arm is the token of the pain the person has gone through and strength that he/she has shown. Rather than seeing a machine that is merged with an organism, the picture is a person that has shown his/her worthiness of using the latest technology of a society that explores solutions for fixing all sorts of disadvantages for its citizens.
Last but not least, our third anthropological theory is the “Actor- Network theory” by Bruno
Latour. It is an approach we will use to map the different actors that are involved in the creation and use of prosthetic limb devices.
3.3 The network between the different actors
Actor-Network-Theory (ANT) describes humans and non-humans as being actors integrated in a network. An Actor, which can be a technology, theory etc., has no essence in itself, but can only be defined by the relations it has to other entities in its network. Like the word “man” gets its meaning from its opposition to “woman”, and they both from the word “children” (Torben Elgaard
2003). Actors are entities that do something. In ANT neither the social or technological units are interesting but the network they are in. Actors which are part of a network, can be interpreted by inscriptions (we elaborate on this later on) between there links (felix.openflows.com). Networks are the undefined relations between the actors. Actors and networks constitute each other, and by that an actor cannot act without a network and vice versa (ibid). By definition there is no principle difference between actor and network (Torben Elgaard 2003:7).
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
A text e.g. can be understood as a network. It has the ability to combine different objects or actors like people, theories, technologies etc. together. This could be for the aim to accomplishing a specific goal. This goal could be to produce a new product, introduce new procedures or to provide new scientific discoveries. The more diverse objects/actors a text is able to combine, the more interesting the text becomes. An example could be the coin. The coin is an actor because it has the ability to mobilise a whole nation’s economic status, by easing a society’s economical transition in daily life. If the coin is counterfeit or a government are in discredit, or the mobilised elements are weak, the coin will then lose some of its power. The user of the coin cannot doubt these strong network connections, and he himself is a part of this network ( felix.openflows.com
).
The coin is an object that can be categorized as a black box.
A black box contains what has become so stabile and secure, that its history and how it has become what it is, has no interest no more. It has become a fact with only the inputs and outputs that has to be taken into consideration. The stability of the box is defined as the cost there is in opening it and changing the content of it. The more a box appears to be closed, the more reliable the network it contains is defined to be, and the more attention there is around it (ibid).
Translation is a term used in ANT to describe the processes that strengthen it. The translation process strengthens the actor, by making it more likely to be associated with other actors. The process creates equality between two actors that were different, and by that makes a new connection. This new connection strengthens the actor, and gives it the ability to take a position where it can speak for other actors (Torben Elgaard 2003:8). The Danish professor Torben Elgaard
Jensen gives an example of an article that reports of an existing neurotransmitter. For that article to be able to stand as trustworthy, it had to have been the last part of a long chain of translations
(ibid).
The book “Laboratory Life” by Sociologists of Science Bruno Latour & Steve Woolgars investigates the transformation of a substance to an inscription. They tried to show that these inscriptions go through various networks of events. “Laboratory life” is about an investigation in a laboratory of neuroendocrinology. In that laboratory Bruno Latour observes, through fieldwork, the intense activity going on there. These observations of activities are then analyzed throughout “Laboratory life” (ibid:10). The book gives an analysis of how a laboratory constructs scientific facts. Torben
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Elgaard Jensen shows that the process can be described in 9 different points (ibid). In the following we will try to show the clear similarities between the two first points regarding inscription devices, and the working process described to us from the staff in SMI that we had the opportunity to visit.
1. The construction of a scientific fact in the neuroendocrinological laboratory involves a chain of events, starting with the work with rats and chemicals, and ends in the publication of an article
(ibid). At SMI they work with similar testing of rats. The construction of their scientific fact starts by testing rats and humans, and eventually ends by a scientific article.
2. In the centre of the construction process there are the so called inscription devices, which are devices as for example measuring devices that have the ability to transform a substance to an inscription, which could be numbers and data of various kinds. Thereafter the inscriptions are rewritten and transformed (ibid). In the book “Laboratory life” they try to give a description of the term inscription devices.
“By contrast a number of other items of apparatus, which we shall call ´inscription devices´, transform pieces of matter into written documents. More exactly, an inscription device is any item of apparatus or particular configuration of such items which can transform a material substance
into a figure or diagram which is directly usable by one of the members of the office space”
(ibid:51).
3.3.1 Analysis of the experts at SMI in the light of ANT
The use of inscription devices is widely used at the department we visited at SMI. At our visit at
SMI we were shown around in one of their laboratories, where they made tests on humans. They attached sensors externally on human scalps. The signals from the brain of the individual were then transmitted into a computer. The computer used scientific calculation software called
“MATLAB” that made the signal processing. After signal processing, graphs and numbers were shown on the screen. These inscriptions could then be used in analysing the data. So these inscription devices mentioned in “Laboratory life” were the very foundation of the research and tests, made by the researches at that specific part of SMI. They relied fully on these devices, and the output or graphs of these devices were the important product which they used.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
At SMI they showed us these graphs and commented on them, and we didn´t talk of how the signal were processed in the inscription device, but merely on these inscriptions. The processes that resulted in these inscriptions were of no interest. This is clearly portrayed in “Laboratory
Life”:
“One important feature of the use of inscription devices in the laboratory is that once the end product, an inscription, is available, all the intermediary steps which made its production possible are forgotten. The diagram or sheet of figures becomes the focus of discussion between participants, and the material processes which gave rise to it are either forgotten or taken for
granted as being merely technical matters” (Latour & Woolgar 1979:51).
The graphs and figures become the direct relation to the substance they are measuring. We could clearly sense that by our visit to SMI. At the PhD student Imran’s office, we were introduced to graphs and figures all over the desk. Graphs and figures were also all over his bulletin board. Every time he wanted to explain something thoroughly, he used the graphs on the bulletin board to support his claims.
“An important consequence of this notion of inscription device is that inscriptions are regarded as having a direct relationship to ‘the original substance’. The final diagram or curve thus provides the
focus of discussion about properties of the substance.” (ibid: 51).
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Figur 4 This shows one of many inscriptions hanging on the walls at SMI
We could define the graphs and figures produced by the inscription devices as actors. We could also define the patient’s brain as another actor. They make a network and are connected via a translation between the two. They get related. The graphs and figures could then fluctuate from one department to another, undergo translations, and thereby make new connection to other actors. These new actors could be other scientists from all around the world, using the inscriptions, and translating it in other inscription devices. New actors could also be material things. The material things could be new inscription devices using these inscriptions to be calibrated and standardized, for the use of further research.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
Figur 5 Some of the inscription devices in a laboratory at SMI
At SMI the PhD student Imran was completing his PhD project. He spent several years in making tests on human brains. Throughout the years he got a lot of data as an outcome of his research.
He had to analyse all that data and compare it, in order to make a good and reliable thesis. This thesis could be regarded as a network. All the different inscriptions he managed to get out of the inscription devices over the years could be actors. Other articles made by other scientists could in themselves be actors. By comparing the many actors and combining them in a network, he could be able to construct several scientific facts.
“The process of writing articles about the substance thus takes the end diagram as a starting point.
Within the office space, participants produce articles by comparing and contrasting such diagram
with other similar diagrams and with other articles in the published literature.” (ibid).
We could by concentrating specifically at the prosthetic arm, look at this actor and try to describe the network it’s a part of. The prosthetic arm has no essence in itself. Most of it consists of metal, plastic and some of the electronics consist of silicon. So what makes it a prosthetic arm? It is the relation it has to the other actors in its network. One of the actors is the user of the arm. In relation to him/her the prosthetic arm could be defined individually. Other actors as the inventors,
53
researchers, scientists relate to the prosthetic arm. Their relation to the arm defines it. Not in one way, but it’s defined in relation to each one of the actors. The actors as the media and the public could also be a part of its network. All these actors could be part of a big network. The prosthetic arm as an actor could then, as the before mentioned coin, be stabilized in such an extent, that it could be put in a so called black box. It would then be so stable and secure that changing it, would have a high cost.
So the interesting thing for us was that by visiting such a laboratory at SMI for the first time, we could clearly see the similarities between that unit and the laboratory described to us in
“Laboratory Life”. For us the similarities didn’t stop only at the laboratory. It was the whole interaction that the researches had to the inscription devices, and to the inscriptions, as well as the way they talked and argued. How they used their inscriptions, and how the inscriptions moved from one place to another in a network. We could clearly see the relevance ANT had to the perception of the working process the researchers were going through, and the many actors mingling together in a network, resulting in scientific facts.
Figur 6 Laboratory rats turned into inscription on computer
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
4 Ethical reflections on the new technology of neural prosthetics
Neural prosthetics are made with the aim of improving the daily life of an amputated person, of adapting and augmenting his/her performance. It is however important to look deeper into what other changes this new technology might cause and see if they are secure in relation to the goal it tries to fulfil. The ethical issues that we want to lay forward and discuss include; the goals and side effects of neural prosthetics on an overall level, the social and personal change of neural prosthetic users, the change of society, the managing of risks, the experts role with focus on context, ethical trials in research and cost for society. Enhancement could definitely be another ethical discussion of great importance and this issue deserves much more attention and in depth focus than we can give it in this project, therefore we will not go too deep into that but only mention its relevance.
We will, as mentioned, consider the contributions of this kind of technology to different aspects of the human identity such as the individual’s perception of freedom and autonomy. Moreover, by reflecting on the data we collected from the interview we carried out when we visited SMI, we will discuss the case of ethical awareness of the experts and of the different actors involved. Even though health care professionals would argue that they work in the best interest of their patients, there are contradicting benefits and business related interests between clinicians, companies and the different actors that can complicate the situation. The needs of the potential limb prosthetic user, the expectations of the society and of the user’s family can vary. For this reason it is important to evaluate the different aspects and approaches of these stakeholders. The ethical perspective of our project is a result of our own thoughts and discussions on the different issues involved in combination with information from relevant literature along with our own interpretations of the interviews at SMI.
In order to present reflections on what effects the new technology of neural prosthetics have and whether these can be termed as secure, we will let ourselves be inspired by two Danish writers that have, through different approaches and concerns, discussed issues of development in society and the ethical reflections that by consequence should follow. The one is very much interested in
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the society as a sensitive whole that gets affected by all the unintentional consequences that new technologies bear with them, and therefore argues that responsibility must be regarded in relation to all that the technology will change. The other one concentrates on the context of problemsolving, where expertise is more than knowing the rules of the issue, it is embodying these rules through experiences so that in the end the answer to what to do comes natural and intuitively.
4.1 The goal and the side effects – users and society
The Danish theologian and philosopher of science K. E Løgstrup (1983) states that one of the crucial things to take into account when dealing with technical development is the question of the relationship between goals and means. Is the goal relevant and secure, and is the way to fulfill the goal responsible? (Løgstrup 1983:17). An often used saying states that the end justifies the means, but this approach is far from ethical correct according to the perspectives in this field developed throughout history. Opposed to this saying, the means must be considered and be secure for the goal to be ethical. The consequences of the means have to be weighted up against the benefits of the goal or in some cases the consequences of not fulfilling the goal. Exactly because the risks and consequences of the means and the benefits of the goals are by nature so specific from case to case, ethics are all about looking at the individual case every time a new dilemma emerges from an evolving new technology. There is only one way forward and that is to thoroughly investigate the impacts of means, judge whether they are severe in character and hold this up against the goal that is laid out.
According to Løgstrup side effects are often trivialized when new technologies emerge. The incitement for this is most often economic- and political agendas. When technologies are being acknowledged and businesses invest in them it is due to profitability, but the business and the technology developing unit must not forget to look at more than their goal of making money – they must, to follow Løgstrup, take into account the whole entity; look for side effects that are causing trouble in the surroundings. It has to be acknowledged that new technologies bear with them a lot more complexity than what is obvious at first glance. The side effects could be e.g. environmental damages, inequalities or human damages. That they are not obvious to the eye at
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012 first glance means that the consequences and damages will show later on as a surprise. These are issues that are hard to take account for in an earlier stage exactly because of their invisible character. We only know what consequences to look out for when they strike us. Løgstrup talks about this and exemplifies it by saying that we don’t think about our capabilities of breathing before a pollution of nature makes it hard for us to breathe and we think about our lungs
(Løgstrup 1983:21). Løgstrup also marks that often it is actually the side effects that transform the context in the end. His example here is that the nuclear family is actually an unforeseen side effect of the industrialization (ibid:22-3). Løgstrup asks the rhetorical question about why we don’t notice a revolution when it is a technology that has caused it? That is because the great change of society happens not because of the outspoken goals that technologies seek to fulfill but because of the side effects it causes (ibid: 23).
4.1.1 The goal and the side effects of neural prosthetics
Actually the goal might not in this case, as in many other cases, be just one. In the media the apparent and outspoken aim of neural prosthetics is to “repair” humans that are missing a limb.
This includes probably several goals; that the prosthetic will have somewhat the same functions as the missing limb did ( cbsnews.com
), that the person will experience less phantom pain (interview with Winnie Jensen), that it might make the person less dependent on (expensive) support and that the person might be able to contribute on the labor market (ted.com).
Here associate professor Winnie Jensen talks about how she normally articulates what it is she does:
“I used to try to explain that I work with these devices that can assist people who are disabled because of injury or damage to the nervous system. We come up with technologies that can help them overcome the disabilities that they have on the central [nervous system] side or on the motor
side” (Interview with Winnie Jensen).
Another case to consider is whether this technology should be used to replace a limb that is not medically necessary to amputate. For example, it can be a problem of lower functionality of an
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arm or of extreme pain due to some nerve damage. The latter is a case that was mentioned by
Winnie Jensen when she was asked about what her actions would be in such a situation. She claimed it was the subject of a discussion she had with a person suffering from extreme pain in his arm and her approach was that if this technology is fully operational in the future and can attribute to a better life, then she would suggest the replacement of the limb (Interview with
Winnie Jensen).
“I actually had a conversation with a guy who still had his arm but had some nerve damage. And he had so much pain that he was in the process of considering having his hand amputated. [...]
What would you recommend him to do and have a prosthetic arm? I think it is a very difficult question. I think there is one unique answer to it. If we had a functional device where we knew it was working without any problems and if, like in this case, the guy would be in less pain after… let’s say he had this arm but he would be willing to sacrifice his arm if he had less pain after. Then I would think I would recommend him to do so if he could get a better life afterwards. If the hand
doesn’t matter” (Interview with Winnie Jensen).
This tells us that an expert like Winnie Jensen is aware that no clear answers can be given in a case like this. Pros and cons have to weight up against each other. It is not just about following a codex that states it is wrong or not to amputate a patient’s limb and to implement instead a prosthetic.
What counts, is the patient’s life quality and not a moral question that is up to health care professionals. Every situation of this kind is unique and should be discussed between patient and professionals.
4.1.2 Social and personal change of user – autonomy and freedom
We have, throughout the project, aimed at providing some insights in how social identity relies very much on how people look and thereby how other people characterize and categorize them.
To implement a robot arm on a human being does more than just change his/her motor skills, it changes his/her self-image and other peoples approach towards him/her. As we shall see, the neural prosthetic creates autonomy and freedom in the person and a side effect to that is how
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012 others cope with this autonomy. By going from being characterized a victim to self-reliant bear with it ethical considerations.
According to the online Stanford Encyclopaedia of Philosophy being autonomous means to be able to live life by your own rules and to be your own person and authentic self. It means that your actions are not externally imposed upon you, but are rather a result of your own desires and considerations. Consequently, autonomy is an important value for the individual to ensure control over his/her life and self-integration (plato.stanford.edu 1). Similarly, freedom involves the absence of anything standing in your way, restricting your wishes and actions. It includes the idea of the individual having the possibility to make a choice based on personal reasons
(plato.stanford.edu 2).
Given these two terms, is it possible to say that an artificial prosthetic promotes autonomy and freedom of an otherwise disabled person? One positive scenario is if the prosthetic has been accepted physically and psychologically by the user who is then able to feel productive, able to perform tasks and activities and is in a position to regain control of his/her life. Another rather negative scenario is if the prosthetic is rejected or felt to be restricting and then autonomy and freedom is not found.
In the case of children, it is usually their parents who decide whether they will receive a prosthetic or not. As they are unable to make this decision for themselves, could it be hindering for the two mentioned values? A dilemma from the physician’s point of view would be the demand of the family members of a child with congenital limb amputation, to place on the child a heavy prosthetic at a stage when its body is not able to adjust to such volume. This would add stress on the residual limb that would be harmful for the growing of the bones (Kulkarni 2010:27).
The health care professionals will certainly stand in a difficult position if the parents want something for their child that might either imply a certain risk for it or a problem later on. When older, the child might wish something else. Examples of these kinds of ethical dilemmas have appeared in different technological areas such as parents that have to decide whether their newborn baby that turns out to be intersex should be surgically operated on to be boy or girl.
Another rather famous example is the South African sprint runner Oscar Pistorius whose parents
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decided to get his legs amputated in an early age due to an invalidating disorder that was not lifethreatening. The parents wanted him to not be tied down to a wheelchair, but instead learn from an early age to use prosthetics. Maybe later on he would have a different view on how they should have dealt with his situation (biography.com).
In cases like this, would it then be ethical for the healthcare professional to disregard the parent’s wishes? As Løgstrup advocates for, we have to take both the goal and the side effects into account when reflecting on such issues. The goal of the parents is probably in most cases to make the child’s life as “normal” as possible. In many cases, “normal” will probably imply that the child has the same kinds of abilities as other children. The side effects that have to be taken into account are: the stigmatization of the child (from e.g. a robot arm), the pain, suffering, trouble and financial issues that come with getting a neural prosthetic that doesn’t last for life, and the risks that it implies with operation and the problem of bodily rejection. These risks we will elaborate on in the following part. So the parents are the ones to make the decision on behalf of the child. This decision can only reflect an ethical investigation if the health personnel or another advisory lays out the different side-effects and risks, plus comparisons with other solutions as e.g. stem cell therapy or donor therapy.
As Løgstrup advocates there might be many unforeseen side effects, but at the same time many might be made visible through, for instance, the health personnel’s experiences and the parents.
Parents can search for information on what happens during an upbringing of a child that relies a part of his/her motor skills on a robot arm and what can become a challenge as the child grows up. The greatest ethical question here is whether the child will agree to the decision that its parents made on its behalf. Therefore all kinds of scenarios have to be taken into account, also the question if the child would blame his/her parents later on for not taken this decision and implement the technology from an early age.
4.1.3 Change of society
Not being stigmatized as disabled but maybe as empowered instead, might, even though it sounds like a purely nice goal, also have some side effects to it. The way society categorizes one will
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012 change, and perhaps greater demands will be directed towards the person. The acknowledgment of the autonomy and freedom that the person with a new robot arm achieves will put him/her in a different category than the one he/she was in when being a disabled. Maybe the person feels he/she has to give something back to society as a compensation for the technology that made this autonomy possible. Gratitude, work contribute, self-reliance etc. might be what is now demanded of this “mechanized” person. An extreme scenario would be that this might lead to a society that doesn’t accept that some people can’t contribute to the community because of their incapability.
When a solution is there, a demand of the amputees might rise to do something about their condition. In other contexts, ethical reflections are about competition because of improvementtechnologies such as Ritalin and other performance-improving drugs. In this specific case, it might be also worth discussing the following; if the option is there and some amputees choose to get the operations and invest in getting a neural prosthetic, it might create a pressure for other amputees to take this opportunity. However, the solution might not be right for everybody, like we have discussed earlier in this project. Forcing a technology on people might have some serious consequences. As we saw earlier in the project, it takes a lot of physical and mental strength to get ready for a neural prosthetic. The demand from a modern society of making oneself competitive might not always be a good thing. Therefore, this issue has to be taken into consideration in order to secure ethical decisions when developing this technology. A famous example of the same mechanism could be in cycling where enhancing drugs, e.g. EPO, make some participators much faster than others. Even though it is illegal many feel pressured to take the drugs to be able to compete. Rather than becoming a demand that amputees should use the technology, it should be a matter of choice.
As Løgstrup argues, what changes society is not the goals we try to fulfil but the unforeseen consequences of our way towards these goals. It is important that we constantly reflect on what kind of society we want to have; one where everyone is forced to invest their money and body in the latest technology in order to be regarded as a contributing person, or a society of free choice.
To ensure the latter we have to limit stigmatization of amputees that do not want this technology.
This can be done through institutions of society both economically (support), in infrastructure
(solutions for disabled people) and in articulation (the discourse of the field).
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4.1.4 Managing risks: Risks of impairment and hopes of repairmen
Winnie mentioned during our interview with her, that a lot of patients are desperate to find a solution that will relieve their pain, whether it’s physical or psychological, without being very interested in the process. Neural prosthetics are still in an early phase and since there is a lot more that scientists have to learn concerning the brain and the human biology, there could be risks and safety issues for humans when using this technology in the future. Placement of neural prosthetic devices requires invasive surgical methods and it cannot yet be guaranteed that they will be successful and not rejected by the body. A faulty device can be harmful to the patient’s well-being.
Even if it is successfully placed, it is possible that it will need to be replaced in the future due to deterioration. A working protocol or a risk management department within the group of the experts can deal with such issues. About managing these concerns Winnie Jensen states:
“We have worked a lot with implanting these electrodes into large animals, for instance, pigs, and then see how stable they are over time. So this is an important contribution before we can move to humans. Because we have to show that they can stay in the body; that they don’t move around, that they provide stable interface over time, that they can act with the body- what we call biocompatibility, so that the body doesn’t reject it. So that I would say is my main contribution”
(Interview with Winne Jensen).
This expresses her physical concern. She doesn’t want this technology to be used on humans before it is safe. Here is however another dimension of her concerns:
“So there is a balance for me in going out and saying ‘Hey, we have this technology, let me know what you think about it but you can’t have it until ten years from now’. So you can see the dilemma. And there are a lot of things for which we are really at high risk. [...] I think often it is not the patients who are holding back. It us as researchers that are holding back. We are way more conservative. You have to test it, you have to make sure that it really works. Patients and doctors
are far more certain. They say ‘let’s do it, let’s see what happens” (Interview with Winnie Jensen).
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
Here she is rather concerned about the hopes that might be implanted in people without being sure that they will be able to be fulfilled. Managing these two dimensions, she needs to know what the users want but she can’t promise them anything. What the quote talks about points to the exact goal of the technology, as mentioned, whereas the fears for not living up to these hopes and the technology being a risky business are the possible consequences.
In the case that the patient is the only person who might be harmed and he/she is well informed about the process and has consented to the probable risks, the patient is to make his/her own decision about a surgical amputation, he/she has to be given all the facts and be fully informed about the procedure. It is possible though that the patient is not in the mental and physical condition of making a decision and then it is up to the person’s family members to decide (Harris
1997:205-207).
We have now introduced and discussed some of the most relevant ethical reflections that have to do with users and the new technology and looked at these points in relation to society. What we want to elaborate more on is the context with the experts as central actors and the ethical dilemmas that should be taken into consideration. Here we will also try to relate the issues to society in order to get a broader view on the wanted effects and the unwanted effects on this technology.
4.2 In order to have ethical reflection we must include in our perspective experts in context
The Danish professor Bent Flyvbjerg (2001) is in his reflections on social scientific matters concerned with the question of whether knowledge about human behavior can be said to be independent of its apparent context. This question we also find very relevant in relation to our project. The question on whether a user can be defined as happier if he or she would get a neural prosthetic seems to be taken as a very general rule. Is the technology and knowledge about BCI and neural prosthetics independent of the context that they are developed, introduced and acting in? In other words; is the knowledge on neural prosthetics independent of context?
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Flyvbjerg wonders about the link between knowledge and context in relation to social science’s ability to be scientific in the same sense as natural sciences. As we represent in the project a merge between a social science (anthropology) and a natural focus/investigation (technology) we find it relevant to open up a discussion on how natural sciences, like those that are behind the project on neural prosthetics at SMI, regard knowledge as non-contextual or contextual in relation to the users and how we, as investigators, see this link between knowledge-production and context. Flyvbjerg draws on the theoretical work of Hubert and Stuart Dreyfus when listing five stages of human learning process:
1.
Novice: acting on the fundament of rules independent of context.
2.
Advanced beginner: acts also according to learned rules but with the capability to identify these rules because of similarities from similar earlier experienced situations.
3.
Competent performer: acts according to goals and plans that structure both contextdependent and context-independent information.
4.
Proficient performer: uses their intuition from experiences to identify problems and goals.
5.
Expert: behaves intuitively and identifies problems, goals and challenges instantly. Their performance seems easy, unhindered and without analytical difficulty (Flyvbjerg 2001:21).
Because experts play a central role in our investigation on the field of ethical concerns about using and developing the neural prosthetic technology, we find this definition of becoming more and more an expert very useful in its inclusion of context.
So the higher up the person goes in level in this learning process-model, the more he goes from being rule-based and context-independent to being experience-based and performing situational
behavior. The skills become more and more intuitive, the rules are not thought of, the decisions seem almost bodily and automatic the higher you get on the scale (ibid:22).
As we have seen in the former part of ethical concerns it is exactly this expert approach Winnie
Jensen represents when she states that she wants to take into account the specific situation when deciding who should have a neural prosthetic. These theoretical reflections are important because, what for the un-experienced eye might seem the right path to follow according to the rules or some kind of script, might not in fact be what works the best way in a certain situation.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
That means that if one doesn’t see the context and follows a set of norms, unforeseen consequences or side effects might be overlooked. Rules can’t define the best way to solve a given problem. The ethical reflections become more and more qualified the further a person gets in levels of the Dreyfus-model.
On becoming an expert Winnie Jensen states:
“As a PhD student I think you should always end up being an expert in your field. So you are the one who would know really the most about the work because you have been sitting in the lab day after day, doing all the data analysis. No matter whom you invite in as an opponent of your data
defence, you are the expert. So there will be specific knowledge that they end up having”
(Interview with Winnie Jensen).
This exactly explains that Winnie Jensen has, during her experiences and day after day training, developed herself into being an expert and that she sees this as a necessary process for the PhDstudents of her group as well.
4.2.1 Ethical trials in research
Apart from Winnie Jensen, we had the chance to interview two PhD students who worked with the technology of BCI. M.Sc.Biomed.Eng. Imran Kahn Niazi and M.Sc.Biomed.Eng. Sofyan
Hammad, the PhD students, also had some comments to make concerning the role of ethics in their line of work. Imran mentioned that the restrictions on their experiments regarding invasive research and trials here in Denmark are a lot stricter than they are in the US. They are not allowed to perform an experiment on humans or animals unless they meet certain conditions. As Imran mentions, there are strict limits to the experiments professionals can do on humans in their research. An example of Imran is that stroke patients have already been through a lot and therefore, it is not recommended to strain further their physical and mental health. Another point he makes is that Denmark is a small country and so the options are not so broad. What he means is clarified when he mentions that when he conducted research in Serbia he managed to get more results as it is a bigger country and consequently has more patients (Interview Imran).
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Sofyan works with rats as it is more difficult to get a license to work with animals of bigger size, pigs for example. Animals have to be housed under specific conditions that resemble their natural habitat and life and that can be costly and time consuming for the scientists. Certain requirements have to be fulfilled even in the most common case of experimenting with rats. An interesting fact is that these days, Sofyan is not able to work with those animals and instead he uses his computer to watch videos of his former experiments and track the behaviour of the rats (Interview Sofyan).
4.2.2 Cost for society
Getting a neural prosthetic arm is an expensive procedure that not everyone is able to afford.
Therefore, there can be dilemmas in the question if it is fair to distribute this technology only to people that can afford it and not to everyone who is in demand. As it is in Danish context, some technologies are after a period of time often regarded a human right. An example of this is the pacemaker that is now a solution free of charge for the patients that have heart problems. But in that case we talk about a life saving device and not a technology to improve motor skills.
“I think that sometimes people forget that we have a lot of neural prosthetic devices out there, we just don’t think about it. Cardiac pacemaker, right? You would never ask the same question to people with cardiac pacemaker because it has become a natural part of medical treatment today.
Of course you can get a cardiac pacemaker” (Interview with Winnie Jensen).
Should the technologies that improve life quality be free to the patients? And what about the case mentioned before with the patients that have disorders that make their limbs hurt all the time – are they included in this categorization? An example of a body function improving technology that is not free is the hearing aid. Support has been given to people buying hearing aids but now a political decision has been made to dramatically limit this support (jyllands-posten.dk). Where do we set the distinction between lifesaving and life-improving? These neural prosthetics involve an enormous amount of time and resources and will probably, in the beginning, when the technology can be said to be ready, be so expensive that most users can’t afford it. Should the society then pay for it and should it be held up against what the user will be able to contribute with to society afterwards in return?
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
In order to consider these many questions we have to take into account the relation between knowledge and context. The knowledge of neural prosthetics is under development and is funded by the society, EU etc. The technological and scientific research is thereby under the pressure of estimated budgets and certain funding. We should consider to which projects society’s resources are distributed on and for what reasons (Kulkarni 2010:28). That we do by weighing the benefits of society, if they invest in both the research part and the implementation part, and the benefits for the patients in this approach with the disadvantages of not making it a social responsibility. The benefits of paying for the users’ neural prosthetics seems a great investment in that the increased autonomy felt by the users might result in a more productive behaviour towards work. However, it is difficult to reflect on the actual financial benefits and weigh them up against the social benefits of happier users.
Another ethical and often mentioned dilemma in the public debate is the question of whether it would be more moral to fund other kinds of research for more urgent purposes, e.g. for curing cancer or AIDS rather than looking into improving the aesthetics of a prosthetic limb. It is difficult to discriminate between different groups of people that have different diseases or malfunctions.
The problem actually arises when we are posing the question of whether we should find a cure for the one group or the other. Why can’t the question be whether money should be taken from another sector and thereby support a lot of different kinds of research in life improving technologies? It is always difficult to get a grasp of what it means to a person with a malfunction to get involved in a certain technological rehabilitation process. The question of who should judge what diseases and disabilities are worth investing in is quite important, and demands insight in both societal and personal consequences. Only being aware of goals and means of one part of the question (patients, research experts, health care professionals, society etc.) is a one-sided story and doesn’t work according to the perspectives of Løgstrup and Flyvbjerg. Perhaps the goal of functionality would be enough for the expert whereas for the user, aesthetics of the prostheses would contribute to a faster recovery, acceptance of the device and overall a better psychological state.
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5 Conclusion – A network of changing social identities, expert knowledge and society’s development in dealing with the technology of neural prosthetics
In a society that relies on developing technologies and constantly embraces them, considerations have to be made about the changes of social behavior. Our motivation for investigating the field of neural prosthetics was the interplay between experts and technologies that are intended to be part of human bodies. To get an insight in this field we had to break it down into different issues of concern. We looked at the interplay between; the researchers at SMI, the technological framework that is interdisciplinary and international, and the potential future users that will interact with the technology.
During the process of our research it became clear that there were ethical issues to take into consideration. Even though the technology of neural prosthetics is not yet on the market in
Denmark, a lot of reflections can be made about the expert research group at SMI trying to understand fully how the nervous system signals work and how these can interact with a computer. How it can read those signals, interpret them and send signals back to the brain, and how amputees regard themselves with and without a technology like neural prosthetics.
The technology could be seen as a continuation of other repairing technologies that work in the body such as pacemakers, but the perception of it is however very different. First of all, there is a distinction between life-saving and life-improving. Second of all, compared to the pacemaker, it is very visible to the eye.
What we found out through stories of amputees in Denmark was that missing an arm or a leg has an influence on how the person sees himself/herself and how they are looked upon by society.
What seems to be a common characteristic is that often the storytelling about getting a prosthetic starts with the traumatic incident of losing their limb, and continues with the changes that came along and the hopes for an improvement in the future. Getting a prosthetic in general (e.g. a cosmetic one) changes social identity, and getting a neural prosthetic changes social identity in a specific way. It offers the individual a sense of autonomy and freedom.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
In the light of the theory rites of passage we could see the amputees as going through phases of rituals when getting a prosthetic. The amputee has to go through a ritual pattern with trials, surgery, fittings, training etc. over a long period before he/she can be reintegrated in society with a new status. We don’t know yet what names/terms will be used for them to describe this new status.
The reaction of the surrounding people stigmatizes the person. Our analytical view on the prosthetic as a symbol suggests that there is a difference in how the person gets stigmatized whether it is a robot arm or a cosmetic prosthetic.
Through our visit at SMI we got insight on how the technical experts search for answers about how brain signals work, and how they can be connected to a computer. It is the project of understanding and finding a way to handle the brain signals that binds the experts together.
Winnie Jensen articulated their goal being able to help people that lack abilities because of missing limbs and their experience of phantom pain. By talking to the two PhD-students we found out that the shared goal of the group in their everyday work is about how to use different methods and machines to read signals from the central nervous system.
The group was structured in a way that no one would have the same qualities. Furthermore, they seemed to have different responsibilities. Certain researchers made experiments on animals, whilst others made tests on humans (non-invasive). The researchers depend on each other’s work and their results are sent around, from researcher to researcher. For example, one researcher can be in charge of testing a specific part of the project on animals, where later on the results can lay the ground for further work, perhaps in testing on humans. Due to strict regulations the researchers can’t make invasive tests on humans on a regular basis. This can be regarded as an obstacle because the imagined end product is for humans. Thereby it is clear that a lot of research still has to be done before there can be a product in the form of a usable robot arm.
During the interview, Winnie Jensen mentioned that it is the researchers that hold back when confronted with users that are eager to get a robot arm that is not ready yet. It was thereby clear to us that she felt responsible for them. When human identities or wellbeing are at stake, the process of technology must be secured.
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Many different ethical reflections can be made by investigating this new technology. The main dilemma that seems to be most important to reflect on is probably the relationship between society and the individual in relation to the usage of this technology. The question of whether society should contribute to the treatment of amputees to provide them with more functionality and thereby more autonomy is difficult to manage. Some major questions emerge when dealing with this dilemma. What kind of society do we want to live in, and which considerations should we have when distributing resources to social initiatives. Society is laying the ground for how individuals are stigmatized when society categorizes which technical health devices are worth supporting financially. There is not one answer to these questions, there has to be constant reflection and debate. In order to get close to the “best solution” one must weigh consequences against gains.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
6 Perspectives
6.1 Second hand data about users
Because there are no users in Denmark that have tried the actual technology of neural prosthetics, we couldn’t interview or in other ways investigate their perceptions on this specific technology.
Instead we tried to draw parallels between what users think about prosthetics and about being an amputee in general, so that we could eventually get a grasp on what a new technology like neural prosthetics would mean for potential users. Our initial plan was to carry out interviews with amputees organized in the patient organization Balance-gang, but it was not possible due to the limited time for carrying out the project. Instead, we used second-hand data. We chose to use data from interviews of a fieldwork carried out by a Masters student in “Sundhedsantropologi”
From the University of Copenhagen, Elisabeth Bomholt Østergaard (2006). We found it relevant to use her project and more specific her empiric data (user quotations) because of her background that builds on anthropological methods.
6.2 A technology that isn’t ready for usage
We allowed ourselves to write about a technology that is not on the market today. The reason why we did that was that in order to have a secure technological development, process and endproduct, it is important to investigate beforehand what could be the pitfalls, misunderstandings, obstacles etc. We want to contribute to a discussion of how the technology of neural prosthetics should be placed in a beneficial but secure way. In Denmark, research isn’t near to an end-product compared to other countries. In USA they are experimenting with implanting the technology in human beings. The physiatrist and engineer Todd Kuiken from the rehabilitation institute of
Chicago is one of the most prominent researchers in the field, and we derived a lot of our technical knowledge from his work (ted.com).
A further investigation in this area could be done about the discourse of the neural prosthetic users. The way of talking about the person in the situation of having a cosmetic prosthetic and a
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neural prosthetic we imagine to be very different. When talking about the experiments that have been carried out with implementation of neural prosthetics in the human body the person is an
amputee before getting the neural prosthetic and after getting it he/she is a person with a robot
arm. This implies that these people are going from being characterized by what they lack to being characterized by what they got.
As mentioned, we chose not to go into a discussion about the dilemma of enhancement. The aim of our project was to investigate a technology that could provide a solution for disabled people. In the future, the technology could have even more improved functions than a natural human limb and thereby it would be relevant to have an ethical discussion concerning enhancement and issues such as whether this could be a privilege, an advantage for some and a disadvantage for others.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
7 The project’s fulfilling of the learning objectives
From the very start we had a clear scope for our project, and an aim to fulfil the aims for the course “Expert Cultures and Responsible Technology”. Our aim throughout the project was to combine the three major aspects of technology, organisation and ethics. For the technology part we described the neural prosthetic technology. The relevant approach for us towards the description of this technology was how the neural prosthetic interacted with the human body and psychology. We looked at how it was implemented on the person and what were the mechanisms that made this interaction between the technology and the human body, possible. Through the process of describing the technological part we became familiar with various technical terms, which gave us a good insight in a technological domain. In the organisation part we wanted to describe and make research about an organisation that worked with a specific technology regarding neural prosthetics. We chose the organisation SMI and described its structure and who the different experts were. We looked at what was their specific research area and which different methods they used in their research. We obtained empiric data by using qualitative methods. We made fieldwork at SMI by interviewing the different experts and used it in our analysis. We also used a theoretical anthropological approach in analysing the expert’s inscriptions and routines in their work in the laboratory, and in how the network of the different actors was connected. We focused on providing a reflecting ethical part that offers a good insight in how wide the range of different inevitable dilemmas is, when dealing with this kind of technologies. The ethical views of the experts were emphasized in our reflections, and we used our empiric data for this purpose.
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8 Working process of the project
We started the project by choosing a technology we wanted to work with by brainstorming. Even though we changed our first focus from human enhancement technologies to human repairment technologies, we had a clear thought that we wanted to work with the implementation of electronic parts on the human body. We chose to focus on neural prosthetics as a main technology but we wanted a more descriptive approach towards a more specific technology, and we thereby chose to describe the technology “Targeted Reinervation”. We used the internet as a source for information concerning the technology, and also got relevant articles from our cosupervisor. We used this data to describe the technology and how it worked. In the part of the project concerning the organization and the users we conducted field work to collect our empiric data. We went to SMI in Aalborg and followed Imran, a PhD student, on a tour in the department, and in one of the laboratories they worked in. He described the research he was doing. We also interviewed another PhD student called Sofyan who explained the field he was working in. Last but not least, we made an interview with the head of the department, Winnie Jensen. She gave us information about the specific technology they were researching in, and an insight in the group of the organization. We used all this information in our analysis as an example of an expert culture, but also for finding out what were their reflections indirectly on ethical dilemmas. We also used anthropological theories as a foundation in our analysis of the organization and its different actors. Furthermore, we were inspired by theories and empiric data obtained from prosthetic user organizations and other research papers on this area, in the analysis of the consequences neural prosthetics could have. Specifically in how users perceived themselves and how society perceived them. We then tried to discuss the ethical aspect of the project. We did that by reflecting on the knowledge we gained, and by using the interview we obtained from SMI. In addition, we used literature for the many different ethical reflections that could be taken on the various dilemmas that emerge with the use of the specific technology. We concluded the project in coherence with the goals stated in the course description. We had a lot of group meetings throughout the process, and followed a specific structure we all agreed on. By effective planning, good supervision and great teamwork we managed to finish the project with minimal obstacles.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
9 Literature
Bomholt Østergaard, Elisabeth. 2006. Protesen er også mig - En antropologisk undersøgelse af, hvordan mennesker, der har fået amputeret en del af et ben, oplever at føle sig hele, at
benprotesen inkorporeres og at blive reintegreret i samfundet. (Masterspeciale i
Sundhedsantropologi.. Vejleder: Anne Line Dalsgaard Undervisere: Mette Meldgaard, Vibeke
Steffen og Tine Tjørnhøj-Thomsen). Institut for Antropologi. Københavns Universitet
Reviewer: De Paoli, Rudy. 2004. Book report: Stigma – Notes on the Management of Spoiled
identity. By Erving Goffman. New York: Simon and Schuster/Touchstone Books.
Desmond, D. & MacLachlan, M. 2002. Psychological issues in prosthetic and orthotic practice: a 25
year review of psychology in Prosthetics and Orthotics International. In: Prosthetics and Orthotics
International. Dublin, Ireland: Trinity Psychoprosthetics Group. 26 p. 182-188
Flyvbjerg, Bent. 2001. Rationality, body, and intuition in human learning. In: Making Social Science
Matter. Cambridge University Press. p. 9-25.
Goffman, Erving. 1963. Stigma - Notes on the Management of Spoiled Identity. London: Penguin
Books.
Hamill, Roger & Carson, Suzanne & Dorahy, Martin. 2010. Experiences of psychosocial adjustment
within 18 months of amputation: an interpretative phenomenological analysis. In: Disability and
Rehabilitation. Manchester: Informa Healthcare. 32(9) p.729-740
Haraway, Donna. 1991. A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the
Late Twentieth Century. In: Simians, Cyborgs and Women: The Reinvention of Nature. New York:
Routledge. p.149-181.
Harris, John. 1997. The Value of Life: An introduction to medical ethics. New York: Routledge. p.
205-218
Jensen, Torben Elgaard. Aktør-Netværksteori – en sociologi om kendsgerninger, karakker og
kammuslinger. In: Papers in Organization. No. 48.
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Kuiken, Todd A. & Miller, Laura A. & Lipschutz, Robert D. & Lock, Blair A. & Stubblefield, Kathy &
Marasco, Paul D & Zhou, Ping & Dumanian, Gregory A. 2007. Targeted reinnervation for enhanced
prosthetic arm function in a woman with a proximal amputation: a case study. Chicago: Lancet.
369 p. 371–80
Kulkarni, Jai. 2010. Ethical and Medico-Legal Issues in Amputee Prosthetic Rehabilitation. In:
Amputation, Prosthesis Use and Fantom Limb Pain. Edited by Craig D. Murray. Springer
Latour, Bruno & Woolgar, Steve. 1979. Laboratory Life – The Social Constructions of the Scientific
Facts. Princeton University Press.
Løgstrup, K. E. 1983. Bivirkningernes verdensforvandlende magt. In: System og Symbol – Essays.
Viborg: Gyldendal. p. 17-25.
Miller, Laura A., Stubblefield, Kathy, Lipschutz, Robert D., Lock, Blair A., Kuiken, Todd A. 2008.
Improved Myoelectric Prosthesis Control Using Targeted Reinnervation Surgery: A Case Series. In:
IEEE Transactions on Neural Systems and Rehabilitation Engineering. vol. 16 Author number 1.
Chicago
Murray, Craig D. 2009. Being like everybody else: the personal meanings of being a prosthesis user.
In: Disability and Rehabilitation. Manchester: Informa Healthcare. 31(7) p. 573-581
Turner, Victor. 1974. Liminal to Liminoid, in Play, Flow and Ritual. In: From Ritual to Theatre. Rise
University Studies. p.20-60.
Wolpaw, Jonathan & Wolpaw, Elizabeth Winther. 2012. Brain-Computer Interfaces: Principles and
Practice. Oxford Scholarship.
Websites:
03-12-2012: https://smi.hst.aau.dk/research/lab/neural-interface/ 1
03-12-2012: https://smi.hst.aau.dk/fileadmin/files/LeafletsEtc/SMI_RIG_NENM_Leaflet.pdf
2
03-12-2012: https://smi.hst.aau.dk/research/lab/neural-prosthesis/ 3
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
03-12-2012: http://www.smi.hst.aau.dk/home/ 4
03-12-2012: https://smi.hst.aau.dk/research/rigs/neural-engineering-and-neurophysiology-ofmovement/ 5
03-12-2012: https://smi.hst.aau.dk/research/lab/neural-prosthesis/ 6
12-12-2012: http://www.rehab.research.va.gov/jour/09/46/4/Stubblefield.html
12-12-2012: http://www.oxfordscholarship.com.zorac.aub.aau.dk/view/10.1093/acprof:oso/9780195388855.0
01.0001/acprof-9780195388855-chapter-019
15-12-2012: http://jyllands-posten.dk/politik/article4901196.ece
15-12-2012: http://www.npr.org/templates/story/story.php?storyId=1966476
15-12-2012: http://www.biography.com/people/oscar-pistorius-20910935
15-12-2012: http://news.yahoo.com/video/man-bionic-leg-climb-willis-231945869.html
15-12-2012: http://plato.stanford.edu/entries/personal-autonomy/ 1
05-12-2012: http://plato.stanford.edu/entries/liberty-positive-negative/#ConOveFre 2
15-12-2012: http://felix.openflows.com/html/ant_danish.html
15-12-2012: http://www.ted.com/talks/todd_kuiken_a_prosthetic_arm_that_feels.html
15-12-2012: http://etiskraad.dk/EtiskRaad/Temauniverser/Homo-Artefakt/Det-kunstigemenneske.aspx
07-12-2012: http://www.sahva.dk/produkter/individuelle-produkter/armproteser-0
07-12-2012: http://natgeo.dk/videnskab/krop-og-sind/mennesker-repareres-med-maskindele
07-12-2012: http://etiskraad.dk/da-DK/Temauniverser/Homo-
Artefakt/Artikler/Teknologi/Cyborgs%20nu%20og%20i%20fremtiden.aspx
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07-12-2012: http://www.cbsnews.com/8301-18563_162-57450685/bionic-men-amputees-saynext-generation-prosthetics-respond-like-the-real-thing/
12-12-2012: http://www.cdha.nshealth.ca/amputee-rehabilitation-musculoskeletalprogram/patient-family-information/upper-limb-amputations
12-12-2012: http://www.rehab.research.va.gov/jour/09/46/4/Stubblefield.html
15-12-2012: http://www.bbc.co.uk/news/health-17251690
12-12-2012: http://www.oxfordscholarship.com/view/10.1093/acprof:oso/9780195388855.001.0001/acprof-
9780195388855
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
10 Appendix
10.1 Interview with Winnie Jensen
Could you tell us a bit about who you are, what your background is, why you are doing this kind
of work?
I originally studied engineering here at Aalborg University and I started back in 1990. At that time you were not able to do medical engineering by having a health related aspect in your studies so I am an electrical engineer, bachelor and master’s and in my master’s I started specialising in doing biomedical engineering. I really entered the field starting my PhD, following my master’s degree.
My PhD was about implanted neural interfaces that go in or around the peripheral nerves of the body. That really kind of formed my research so I am still doing implantable neural interfaces, one of my core subjects you can say in what I do, so developing and testing this neural interfaces. I expanded a bit since my PhD so I would both work with the peripheral nervous systems, the nerves in our arms and our legs, but also with the central nervous system, the spinal cord and the brain.
If someone asked you what you do for a living, what your work is today, how would you describe it?
That is a good question! I used to try to explain that I work with these devices that can assist people who are disabled because of injury or damage to the nervous system. We come up with technologies that can help them overcome the disabilities that they have on the centre side or on the motor side.
For how long have you been working here at SMI?
I am what I call a product of the system so I have been here for a very long time. I did my master’s and my PhD here and then I lived for about three and a half years in the States doing one of my postdocs. Then I came back because I landed a permanent position as an Associate Professor here, back in 2006. So that is kind of my story line but I always had an attachment to this department throughout my career.
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You mentioned some of the projects you are involved in, are there any more projects?
I can’t remember what I mentioned to you. There are different projects. There are some that are focused on the peripheral nervous system, some on the spinal cord and some on the brain side.
On the peripheral nervous side we are part of a European project. We have the aim to implant new electrodes that we sort of put into the nerve, we sew them into the nerve, so they align the context inside the nerve. Here we aim to stimulate. There are basically two ways that you can talk to the nervous system, interact with the nervous system, you can put electrical stimulation into the body and then we can feel what is going on. The other way around is that we can record, try to intercept what the body is trying to do by recording from the nervous system. In this EU project we are trying to stimulate, we are trying to generate artificial sensations to a very particular group.
There is a group of people with amputations. When you have an amputation you often feel like you still have the limb. Maybe you have heard about it. It’s called phantom pain. So this project is about trying to supress the phantom limb pain by actively sort of cheating the brain to believe that there is still a hand present, although there is nothing out there. So that is one example on the peripheral side. On the spinal cord I am involved in a project where we do animal experiments, rat experiments, to try to supress epileptic seizures. There is a big problem with controlling epileptic seizures for this group of patients. But 50% of the patients are not responding to medication or any kind of treatment so people try to find alternative ways to help them. People don’t really know why spinal stimulation works but it works. So we are sort of trying to find out what are the good ways to stimulate, how we optimize to supress this seizure. On the cortical side you talked to
Soyfran, right? Trying to develop new means, algorithms, to interact directly with the brain in order to interpret what is going on.
Concerning neural prosthetics in general, how did you get into this line of work? What were
your personal interests? Were there any particular reasons behind this choice of work?
I think it really was during my PhD that I started this line of work. Of course you have a very specific task when you are a PhD, but I think that what really grasped me was trying to develop these interfaces. And then, what I have been working on since my PhD is the animal side because many of these technologies, we have to test them on animals before we can try them on humans which is a very natural way. So you can say I have become really good at working with animals and
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012 trying, developing and testing these technologies. And that has always been a core interest to me, to combine these two things.
But in the first place, when you started with your PhD, why did you choose this and not something else?
It’s a very good question. Maybe I chose it a bit randomly because at that time there was a high unemployment rate like there is now, so somebody came and told me ‘I think you should apply for this’. And I said ‘Yeah, let me try it’.
Today, what would you say is the most fascinating thing about your research? Could you name something?
The most fascinating thing is to see something that you have been working on for a very long time, actually succeed. Something really big, something people say ‘Wow, this is completely crazy’, somehow you landed it. I think that is the biggest satisfaction.
I would like to ask you about your research group, whom it consists of and how it is organised.
My own little group... there is me, I am an Associate Professor, then there is two other Associate
Professors. We have a number of postdocs, PhD students that sort of work together within the same field. You can say that what keeps us together as a group is that we work towards these neural prosthetic devices, technologies, which can assist people with sensory motor disabilities. To overcome these disabilities. What keeps us together as a group is that we have the link from animal to human. I have the expertise in animal work as I talked to you about it before, and we have another Associate Professor who works with patients. So we are trying to make a link, what I learn from the animals to bring it out in the clinic so she can test it on patients and on the other hand if she sees something in the clinic, she can say ‘Oh, we don’t know why it works’ and then try and bring it back and test it on the animals.
What are the backgrounds and responsibilities of the people you work with?
The backgrounds are a mixture but we have a majority of people with an engineering background or a partly technical background in what we do. Not saying we could not hire people with a nontechnical background, but what we do and how we test often requires a great deal of technical knowledge. We also have a medical doctor so we do span out, but we try to design projects that fit
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to the individual. I will never be as good as a medical doctor; I cannot touch a patient in the operating room but I can do hands on surgery and stuff like that. You pick up on all these things that you need to know or techniques that you need to learn along the way.
We have looked at the SMI website and we have noticed that 50% of the staff comes from abroad. How is it to work in this way, work with foreign people?
It has always been like this for me, I have never known anything else, I never worked in a private company where they are 100% Danish. It has always been a part of working at SMI that the daily language, meanings or anything else, is conducted in Danish. So it is pretty natural for us that the working language is English. All the documentation, everything is always done in English. It is more of a working condition for us. Of course there is a challenge about it, but I think it is more on the cultural side. People coming from different cultures. That of course you know is from time to time and I still get surprised sometimes, ‘OK, what really happened there?’ and then ‘OK, maybe it was sort of a cultural thing’.
Maybe the way they work is different?
Yeah, people work in different ways, there is no doubt about it. They have different attitudes towards work and how you work. Small things like holidays and meals. Everything when you talk about culture. I have some Chinese students that are afraid to sit down like we do now, and talk.
They can’t look me in the eye because they are used to a very hierarchic structure so it takes time to teach them that we can do things differently in Aalborg. But I think that the majority of people they adapt to the Aalborg problem based way in which you sit down, talk with your supervisors eye to eye and discuss problems. We also have some students who come with traditions and supervisors tell them ‘this is what I want you to do’. And they are not really good at handling this problem based work where we say ‘we think you should do this’ and then it is your decision to do it. So that is a big challenge.
But perhaps people who come from abroad can create some kind of a bridge to other communities, knowledge and people that in another way you would not be able to associate with.
I think that within maybe Europe, there is always a link to foreign universities so we have a bridge to other universities where we can send students. I think that one thing we saw that refers to
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012 what you talk about is China. Because it is very difficult to enter China because of the language, but the Chinese students may be able to bridge that gap for us.
How much work space does each one of you have in the group? Is there some kind of structure when you work?
Physically, my office is pretty much in that building. We are constantly growing over here and expanding like crazy so it is difficult to always be in the same place. I am lucky that the majority of my group is over there. We are pretty close to each other. The room size, when you see my office, the room of Soyfran is bigger. It is very normal that an Associate professor has an office of this size and that normally Soyfran would share with one or two other PhD students. So that is kind of the physical structure.
So you are physically close to each other. Is it better for you to interact with each other?
It is sometimes easier than to go all the way to the other building. We could do that if possible.
Our lab for instance is across the street. It is nice that we are together but it is not mandatory for the kind of work we do.
But you interact on a daily basis?
I personally do not interact with everybody in the group on a daily basis. The group is simply too big to do that. I interact with my students several times a week because they are also close by so you say ‘hello’ in the morning and ‘goodbye’ when you go home. But it is not like we meet every morning and say that today I am going to do this and this.
You say that the group is big, how many people does it consist of?
We are probably about 20 in total.
How do you coordinate your work? Do you have meetings?
Yeah, we have some regular meetings. I have two levels of meetings. I have with the senior stuff where we try to make the most strategic decisions together for the group. Then we have for the entire group also, including PhD students, where it is more on the scientific side, discussing science and progress, which conferences are good, submitting papers. Some more down to earth level with the PhD students.
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Are you very alike or different in your group?
We are quite different but then again that is normal. We don’t work very differently, I mean there is a certain mind-set that we have in common and that is why we work well together in the group and we support each other in the group.
So that is a good thing.
I think it is a good thing. I think the challenge in this structure is that when you work at a university level like we do, there is always a certain degree of things that you do on your own. You do them alone and you just have to sit down and do your stuff. So people are very independent and I think that is the main challenge in getting a group to work together.
Do you have some kind of a database, a forum where you upload information?
Bottom line, no. For data sharing you can say that me and Natalie we are working on two different projects so we have individual PhD students and projects. Actually we are looking at working on a new website now where there would be more sort of visual information. But a lot of what we are talking about we don’t want to expose it out on the web. We could do it in a more closed environment but right now it takes more time than what I get out of it.
Would you say that certain knowledge or skills are needed to fulfil the things you are researching?
It is very much depended on the project. For the majority of the projects, I would say you have to have a really good technical background. Math and especially programming, knowledge within the health area such as anatomy, physiology. If you have that combination…I think most of us have that.
So they have their own specific area of knowledge or a wider knowledge of many things?
As a PhD student I think you should always end up being an expert in your field. So you are the one who would know really the most about the work because you have been sitting in the lab day after day, doing all the data analysis. No matter whom you invite in as an opponent of your data defence, you are the expert. So there will be specific knowledge that they end up having. And then of course we are trying to share knowledge and information so you also get a broad idea of what is going on within the research field.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
Are the people engineers, doctors?
Mainly biomedical engineers and we only have one medical doctor.
How about ergonomics?
We have people who are more related in the physiotherapy area. No ergonomists. There are people who work in this; they are more in the biomechanical area.
Do you have a strategy? Who is in charge of this strategy?
It works again on two levels. On a group level and on an individual level. Clearly, on the Associate
Professor level like me and two others, you try to develop a strategy for which direction you want to go because it is very important in regard to funding. Funding is like winning the lottery. You never know what is coming up, you always have to be ready to apply within a very short time frame. I am actually working with a group right now with a strategy where we try, in a closed form, develop ideas, be innovative so everybody has one or two proposals in the drawer ready to pull out. When the call is there you don’t have to start thinking about what you want to do but you have a basic idea and then you have to do the hard work of writing and forming it and so on. In that sense we work strategically.
You spoke about collaborating with other departments, agencies; are there some kinds of premises in working with them?
There is always competition. There is no doubt about it and it is normal to be competitive with regard to publication, who gets the names and publications, who gets the first amount on top of the grand, who is coordinating… People are always in projects with a specific aim and goal and have to be because it is very competitive. You can’t, like maybe 30-40 years ago, sit down and do one thing for the rest of your life. This is not how science works today. You are in it and then you are in it for something. There is more at stake and I say that whatever I do, I have to have a purpose with what I do.
So you don’t do science for the sake of doing science, you do it for a purpose?
Well, there is something that drives me to do what I do. And that is really the belief that with what
I do I can develop some tools that can help people. That is my personal motivation factor for doing all this crazy work and working long hours. And the university, it is probably like that also in
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Copenhagen, we also benchmark. So you know the way universities are funded today, if you publish that many you get that many points. So we are benchmarked with certain criteria. We have to publish, we have to create funding, we have to produce PhD students and we have to produce teaching. So I don’t do things for fun but to sort of match those criteria.
Since you mentioned funding, could you describe the process and tell us from whom you acquire funding?
In Denmark there are basically two, three, big national funding sources. There is Stratgisk
Forskningsråd, and Højteknogifonden and Danmarks Grundforskningsfond . This Danish National
Research foundation is a really big grand so it is not something you can apply for on a regular basis. The Advanced High Technology fund is always in collaboration with companies, so if you have collaboration with a company you can go through that root. There is the National Research
Council where you can apply for whatever creative ideas you may have. It is like free research. On a European Level there is the European Union. EU works with different ways to implement funding. So it can be a smaller collaboration with three, to seven, to ten European institutions. It can be larger and individual funding also. So there are on both European and National level. It is getting very difficult to obtain national funds. The hit rate is between 5, 6%, so even if you apply there is about 6% chances of you getting it.
If you manage to get the funding, do you then decide more detailed what to use it for?
No, you always have to make proposals. For instance, you have to be very detailed about what you want to do, what is the aim, what comes out of it, you have to describe very specific categories that are decided by the funding agencies. So they say ‘you have to describe this and this and this’.
Would you then have to present research findings to justify the use of this money?
That depends on the funding organisation. How and what specific information they actually want.
Some want some basic results and others don’t care. The government has the option to put some strategic funds. Allocate some money to better sewage or better conditions or health rehabilitation. I think it is 50 million in 2013 that are saying ‘well, this is for rehabilitation and health’. But that is kind of it. The EU is much better at that.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
Could you mention different possibilities, technologies, when it comes to neural prosthetics? For example, as a group we are interested in the ‘Targeted Reinnervation’.
The ‘Targeted Reinnervation’ is the technique that has been invented in the US by Todd Kuiken at the North-western University and Rehabilitation Institute of Chicago. A very famous rehabilitation hospital. We don’t do it here in Denmark. If you have amputation up here then you have very big difficulties in placing a socket, a prosthetic device, and also finding sources for control. So when we control a prosthetic device we need some signal from the body saying ‘open or close’, ‘rotate or not rotate’. Because you are simply lacking the whole arm and normally we take information from the surgical stump in the arm and translate that into control signal of the prosthetic device. If you have a very high level of amputation, that is not possible, you simply don’t have muscles. So they got the idea and took the nerve stump from the two main nerves, there are actually three nerves, there is the median, the ulnar and then there is the radial nerve that goes here in the back.
And said ‘OK, let’s try to find another source’. They took the nerve, they sort of split it up in several parts and then they attached it to different compartments of the muscles so in the case that the person thinks ‘I want to flex my elbow’, a certain part of this muscle contracts up here and then they can read that information and put it to operation of the prosthetic device. It is like rewiring the body.
So it is like an amplifier?
It is a biological amplifier, you can say that. The downside about this is that it is a very invasive surgical procedure. You know, you have the nerves split up, attached to the muscles and it also takes a very long time before the nerves actually attach to the muscles and regrow so the nerve and the muscle can communicate. It can take six to eight months, to a year, before that communication. So it is not plug and play. It is not like ‘Oh, I had the operation; tomorrow I can work my hand’. It’s not how it works. It is a promising but very complex technique and also very expensive. So it’s nothing that is commercially available right now. There are a few prosthetic devices that are available to… I think it is a dozen patients both in the States and also here in
Europe right now.
Do you then think that if this technology improved, it would be a good option in the future?
If they can manage to make a prosthetic device that is lighter and not so expensive, that is one
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thing. I think the basic idea they have shown works. This Targeted Reeinervation can happen, can be done.
How would you characterize your own contribution to neural prosthetics?
There are different directions. It is too bad Ernest isn’t here; he could have talked about control of the hand prosthetic device. We have been working with traditional extracting information from the muscles and translating that into movement of the hand. What Ernest is particularly good at is when we have electrodes that do not go into the nerves but to the muscles. That is pretty new. So you try to control a hand prosthetic device with intramuscular emg . I think that my main contribution has been in the part of showing the stability of these neo phases, again through animal experiments. We have worked a lot with implanting these electrodes into large animals, for instance, pigs, and then see how stable they are over time. So this is an important contribution before we can move to humans. Because we have to show that they can stay in the body, that they don’t move around, that they provide stable interface over time, that they can act with the body- what we call biocompatibility, so that the body doesn’t reject it. So that I would say is my main contribution.
Who is actually building this arm?
You can say that we are not involved in building the arm. I mean if you control a prosthetic device.
So we have been using commercial devices from ‘Otto-bock’ which is one of the main prosthetic companies.
For what different purposes do you think this technology and research can be used for?
I mean the hand is pretty specific. I think there is more potential in exploiting the one that I talked about, the phantom limb pain. Because they actually have the possibility not only to stimulate, to relief and handle the pain but we can also take information out so we can control the prosthetic device. So this interface you could say can be used for more things. It is not particular to relieving phantom limb pain but it can be used for more things.
Concerning the users, do you have any contact with them? Are they familiar with the risks and benefits of this technology?
I have some contact. Especially with the EU project with the pain. Phantom limb pain can be quite
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012 difficult to manage. People are often not very responsive to treatment and at a certain point a lot of people are quite desperate to find a new alternative way to get rid of the phantom pain. So I have actually had quite a lot of reactions from patients being interested in participating in this research subject within this framework. So there is some communication. I think often it is not the patients who are holding back. It us as researchers, who are holding back. We are way more conservative. You have to test it, you have to make sure that it really works. Patients and doctors are far more certain. They say ‘let’s do it, let’s see what happens’.
Are you looking for specific feedback from the users? Is there feedback that is not of interest to you?
I haven’t conducted a service or anything in relation to this. Normally I talk to people if they call me or write to me, or if I am trying to find out what their background is. But that is more of an informal contact that I have with patients.
Who would you say deals with the users, their expectations and their needs?
It is a balance. I mean there are those who do user-driven design. The first thing you do is to go ask the users ‘what do you want’ and then they go back and say ‘OK, let’s design this for you’. The technologies I work with are not something you would see in the market tomorrow, not something you would see in the market in one year. If we are lucky, ten years from now. So there is a balance for me in going out and saying ‘Hey, we have this technology, let me know what you think about it but you can’t have it until ten years from now’. So you can see this dilemma. And there are a lot of things for which we are really at high risk. Development. It’s not some technology outside the body that you can always improve and replace. We don’t have that option.
It takes longer time to develop these things. So the users will come in and they will also be part of this EU project but it is often at a later stage. So it is not user-driven technology that we do.
So they do not have a lot of information about the specific technology, beforehand?
Basically no. Because you can say that we don’t have anything to offer. That is always the second question you get: ‘So when can I get this system?’. And I have no answer. They are not so interested in the process, they want the product.
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How do you conduct the experiments with animals?
It really depends on the type of the project. You talked to Soyfran, I don’t know how much he explained about the animal experiments. There are sort of two categories of animal experiments.
You can say there is the short duration-typically one day experiments and that is what we call acute experiments. Then we have the ones which take place over several days, called chronic. On the acute experiment, we go in, we do the surgery, we put the electrode in the nerve or in the brain for instance, we do measurements and then the animal dies at the end of the day. So it never wakes up, it is always anaesthetised during the procedures. We can test a lot of things and get a lot of information from this type of experiments. The chronic ones like the one you saw with
Soyfran’s rat, we are working in the cage. In that case you train the animals to perform the little task, we implant the animals, put the electrode in the brain and then the animal is allowed to recover for a few days and then we start the recording process. And that is a lot more time consuming because it is like as… imagine if you were used to working with a dog, a cat, a horse or whatever, you really need to take time to work with these animals. Animals are unpredictable you cannot ask them to be nice and behave for an hour. You never know which way it goes.
The PhD students mentioned that there were some ethical issues involved in using animals of a bigger size. Is that right?
It depends. We have to, like in any other experiment whether you do human or animal, you have to apply the ethical committee to do so. So we have a protocol, procedures that are in place. In
Soyfran’s case we do rats because they are small, cheap, easy to handle and they are actually pretty smart animals. We could also do his experiments in pigs. Pigs are also pretty smart animals, smarter than dogs for instance. You can train pigs to do a little video game and whatever. What we cannot do, what is really difficult to do in Denmark, its primates. That means monkeys.
Because the EU has some very strict regulations in how you house animals. All animals whether it is rats, pigs, guinea pigs or rabbits, they have to be housed under almost normal conditions. And in the case of primates it means you have to have not one primate but you have to have 30 primates living in a colony. That is extremely expensive and very few people have won animal facility in
Copenhagen and it has actually been closed down because it is simply too expensive.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
Are there any work related norms that you have to follow? Are there any values that SMI has?
For ethical issues… not in relation to animals. We have to follow the rules, regulations that are laid out by the local ethical committee for the human and for the animals also. So that is you can what we follow when we do this.
Do you personally see this as an obstacle for your work?
The ethical committee, no. Again it’s a condition. It has always been there and it is just the way it is. It’s just another thing you do in getting to the point where you can do these experiments.
Are there any occasions in which you would not recommend a neural prosthetic? Is it safe?
Would you say that it would be safe for someone to drive a car even though it is not yet possible?
I am not sure I am the right person to answer that. Because I don’t work that closely with the patients and again my focus is on the animal side.
According to what you know and see, do you consider it safe?
The types of the prosthetic devices that are driven by neural signals are not on the market either.
All the experiments and the use are done in a safe lab environment. So I don’t see that as a problem. And this with the normal driven prosthetic devices with surface emg, I know that a lot of people used them so I don’t think it is a big safety issue at all.
Just to hear some of your personal perspectives, when people have a neural prosthetic should they be treated equally with everyone else in the society or should they receive a special treatment?
I think, of course they should be treated like everybody else. I think that sometimes people forget that we have a lot of neural prosthetic devices out there, we just don’t think about it. Cardiac pacemaker, right? You would never ask the same question to people with cardiac pacemaker because it has become a natural part of medical treatment today. Of course you can get a cardiac pacemaker. When I do these sorts of ethic presentations I have sort of a little slide and we talk about the degree of evasiveness with the neural prosthetic devices. We ask people ‘would you ever consider having a cardiac pacemaker’ and everybody says ‘yes, of course’. And then we ask them ‘would you like to have a heart from a pig’ and then people start to say ‘maybe…maybe not’.
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‘Would you like to receive a mechanical heart’ for instance, ‘would you like to receive a heart that has grown from stem cells’ for instance, and then it becomes more of a grey zone because we don’t know all the examples, we don’t have any good proceedings for understanding what are the reactions to it. So I think of course that once we have the first few patients this will be just as acceptable as anything else. Also think about the deep brain stimulator, I don’t know if you have heard about it. We have an electrode that is drilled right into the centre of your heart. It is like this big. And it can do a lot of damage but it has also become very acceptable because it has some good outcomes, some good treatments.
An imaginary scenario: What if someone who had a problem with one arm (e.g. lower functionality) came to you with the aim of replacing the arm with a prosthetic one. What would you think?
I actually had a conversation with a guy who still had his arm but had some nerve damage. And he had so much pain that he was in the process of considering having his hand amputated. So that is a little bit the question you are asking. What would you recommend him to do and have a prosthetic arm? I think it is a very difficult question. I think there is one unique answer to it. If we had a functional device where we knew it was working without any problems and if, like in this case, the guy would be in less pain after… let’s say he had this arm but he would be willing to sacrifice his arm if he had less pain after. Than I would think I would recommend him to do so if he could get a better life afterwards. If the hand doesn’t matter.
I would like to ask you about what is your main concern in your work.
I think my main concern is providing hope to some patients if we cannot deliver. As I said before it is high risk projects we do. We don‘t always know how it is going to fall out. I still have patients coming to me saying ‘so when can we get this thing, when is it on the market?’. I think that if you would say I have a concern, that would be it.
In your group, do you feel like you are making a difference?
We have actually been through a process where we were sort of sitting down and saying, defining a mission for our group. So I think we try to get there. People see the long term goal in this.
Personally, for me this is a driving factor. If I don‘t see that long term goal, what I do doesn’t make sense.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
What are the biggest obstacles when you develop the neural prosthetics?
One of the main problems, of the main challenges in neural prosthetic devices is the compatibility.
The body’s reaction to this. Nobody has found a good solution to that. Because no matter what you stick into the body, the body will react to it. If you have a pacemaker the body reacts by sort of encapsulating, putting a little protective layer of tissue around it. In our case it can both be good and it can be bad. It can be good because it stabilises mechanically what we have and it can be bad because it isolates our electrode from the cells we want to stimulate a record from. That means we can risk that this doesn’t work the way we want it to. So I would say that this is one of the main technological challenges.
Can you name anything else that needs to change or evolve from any aspect?
Funding, but we already talked about that. There is a trend within funding that you have to have what we call a translational aspect. So a lot of the funding agencies expect from you that within a short time frame of two to five years, you have an idea that is high risk, innovative… in two to five years you have a product. And that is with my line of work, you can basically think it is impossible to develop a product with invasive technologies, with the kind of funding that is available. If you scale it up and you give me a hundred million and I hire some people to solve problems with the size of the funding it is just not possible. So it takes time.
So the funding is not enough?
The funding is structured in an inflexible way if you ask me. The government, both the previous and the current one, are very focused on ‘we need to use the research for something’. When we use the research it has to produce new positions, money, products and companies. Yes, we should also do that but you can’t always do that within a two to five year framework.
I would like to ask you about the prosthetic of the future. Now, you have some kind of a technical way of doing the process. You put electrodes inside and you read some signals that are translated and processed in the computer. Do you see other possibilities for the future? Do you think there could be other ways to interact with the body?
Of course I am a little bit biased. It depends again on what type of information you want out of the biological signal and what your aim really is. There is a really cool new sensor that looks like a little band aid. It is stretchable, it’s flexible and you can’t really see it. So there is a seamless integration
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with the body and you pretty much place it anywhere. I think, and that is why we keep to the nervous system, that you need this highly specific information that you can get from the nervous system in order to control this very advanced prosthetic devices. You can imagine that the more advanced this hand is the more information we need to control it. If you have five fingers, many joints, rotations, stretch, then you can also imagine that it is not enough just to have an on/off signal out here because it cannot be translated.
So would you say we are still in a primitive face?
I wouldn‘t say we are in a primitive face but in a phase where we have a lot of components.
Somehow it is still a challenge to get all those components to talk together in a seamless way. The dream scenario is that everything is integrated, it is underneath the body, you cannot see that you have this implant and it’s communicating in a wireless manner together with the prosthetic device and the prosthetic device looks like a natural hand. If you saw the Star Wars movie, you can see all this and when the hand ‘shuts’, you can’t see anything that implies a prosthetic arm.
That concerns more the aesthetics of the arm. I am referring more to the possibility of the device moving like a real arm. And looking at the Targeted Reeinervation, it seems very primitive.
But there are two sides to that. Maybe the prosthetic is the limit. But there are two sides. The prosthetic hand that is not designed well or it’s the signals that we can’t interpret well enough yet.
You can’t be specific enough? There are not a lot of variables?
Probably yeah.
10.2 Semi-structured interview with PhD students, Sofyan and Imran
Introduction to Imran
I’m originally from Pakistan and i have a bachelor in biochemical engineering. I came to Germany to do my master in 2006. I joined HDSD (health, science and technology) SMI (sensory motoring interaction) in 2009. So basically my thesis have been on brain computer interface for stroke rehabilitation.
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
So what is brain-computer interface
What happens is that you get some signals from the brain, and from different sides of the brain you can get signals. Just from the top of the scalp we can go up, and we can go further deep down, and then on a cellular level there are different ways we can receive the brain signals. Once we have that signal, we do some things possessing the depth and see, and then we can get the command. For example, if you are about to move an arm, so your brain is doing some activity that i am trying to predict and activate an external device i can communicate with. Mostly these has been used for communication. like these people, if you have heard ELS (?), like these are completely locked in business. It’s a generator, central nervous system. What happens is the famous super man guy, chris.. They can not control their body, they loose their control, but their brain is still working. You can try to inter predict what they are trying to think or talk, and then they can type in on the computer. They can’t speak, but they can look at the computer, and if they just focus on one letter , we can see in the brain what letter he is thinking about. So it is basically a keyboard. It is registration what he is looking at. We are not recognizing the words in the brain.
The way it’s presented to the subject is that they get a keyboard on the computer, and it is flashing every milli second. Because of the different flashes it can scan the whole keyboard in a few hundred mili seconds. So the brain is looking at something and is getting feedback. And then when the bigger flash comes, even though you don’t look at it your brain can see it, this is what we call all ball paradigm. Similarly, when you are looking at a computer, the brain is scanning the whole keyboard, but at certain frequency ....???? It’s not the letter itself that is recognized, but the flashes. The flashes goes into the brain.
That is what we are using it for, communication, so people can write email and communicate.
And then the next part is, for example if a person is paralyzed, people who can’t walk anymore and sitting on a wheelchair, then the problem is that they don’t have the ability to use both arms and legs, but what is more or less intact is our brain, thats why we can still use the brain to take
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the signal. One side of the brain is controlling the right side and the other is controlling the left. So if I want to move my right arm it’s the left side of the brain.
............
The invasive research and trials finds place in the US. Committees are very strict in Denmark.
Because you need a bigger reason than just experiments. That makes it hard to do the research.
The ethical board is limiting the time to make research on patients, they see it from the patients point of view, and the stroke patients have already been through a lot. We want stress them. The patients liked the experiments.
I have done experiments in Serbia, because it’s a bigger country so more people who get strokes that creates more patients for me, and more and faster research.
This technology is minded for rehabilitation, communication, gaming. It’s using only the brain - no joysticks or anything - but it’s still only lab experiments.
Right the moment you are sending signals to the computer that reacts, but in the future it will hopefully be a chip, that can be in complemented in for example a robot arm.
Interdisciplinary field:
Basic science research and the technology aspects. Optimization, is it possible?
Biomedical engineering: Work together from different fields, among others can be mentioned:
Communication, mechanical, electronics, physiologist, computer science, doctors. All different fields together become biomedical all combined. Different perspectives that is combined.
PhD students work across each other, with their supervisors too.
Talking about how to work together with people from different areas: You have to create your own area, but then you work together with and collaborate with other people and professors from other fields
Project in “Expert Cultures and Responsible Technology”. Techno-anthropology, 7 th semester.
Group C. 17-12-2012
Sofyan tell us abouts about their experiments, how they combine electrodes to the head and read the signals through a computer. All the computer programs are made by the team themselves.
First they see how the system is working on a healthy person where everything is normal. And then later they move on and try the system on patients.
Why did Sofyan choose this project:
Coincedence, my professor (in Germany) knew this professor, Winnie Jensen. The professor recommended me for this job. I did some similar things not the exact, but i was looking for a PhD in the field of neurophysiology. Got the opportunity to work with a certain experienced professor.
Sofyan’s studies:
Recording from inside the brain. Want the signals from the neurons to know what controls what in the body. Master in biomedical engineering.
Are doing studies in the brain. On animals. Done lab studies on rats, but are now evaluating the data. Can do experiments with brain computer interface on lab rats, by training them through food.
There are a lot of restrictions in Denmark, not that many in the US. Very few studies on humans, mostly on little animals like rats, because there are many restrictions with big animals like monkey, and even more with humans. High risks about the trials, because of implants in the brain.
Ethical aspects on animal experiments, on big animals. Ethic program, event though it’s on little animals, requirements that you have to fulfill.
The goal is connection between the human brain and external devices in case of severe injured people.
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