SPECIAL INTEREST ARTICLES
Ethical Issues in Brain–Computer Interface Research,
Development, and Dissemination
Rutger J. Vlek, MSc, David Steines, MSc, Dyana Szibbo, MSc, Andrea Kübler, Prof.,
Mary-Jane Schneider, PhD, Pim Haselager, PhD, and Femke Nijboer, PhD
The steadily growing field of brain–computer interfacing (BCI) may
develop useful technologies, with a potential impact not only on
individuals, but also on society as a whole. At the same time, the development of BCI presents significant ethical and legal challenges. In
a workshop during the 4th International BCI meeting (Asilomar, California, 2010), six panel members from various BCI laboratories and
companies set out to identify and disentangle ethical issues related to
BCI use in four case scenarios, which were inspired by current experiences in BCI laboratories. Results of the discussion are reported in this
article, touching on topics such as the representation of persons with
communication impairments, dealing with technological complexity
and moral responsibility in multidisciplinary teams, and managing
expectations, ranging from an individual user to the general public.
Furthermore, we illustrate that where treatment and research interests
conflict, ethical concerns arise. On the basis of the four case scenarios, we discuss salient, practical ethical issues that may confront any
member of a typical multidisciplinary BCI team. We encourage the
BCI and rehabilitation communities to engage in a dialogue, and to
further identify and address pressing ethical issues as they occur in
the practice of BCI research and its commercial applications.
Key Words: brain–computer interface, ethics, locked-in syndrome,
neuroethics
(JNPT 2012;36: 94–99)
Radboud University Nijmegen, Donders Institute for Brain, Cognition and
Behaviour, The Netherlands (R.J.V., P.H.); University of Illinois, Department of Electrical and Computer Engineering, Urbana-Champaign,
Illinois (D.St.); NeuroSky Brain-Computer Interface Technologies, San
Jose, California (D.Sz.); University of Würzburg, Department of Psychology I, Würzburg, Germany (A.K.); Laboratory of Neural Injury
and Repair, Wadsworth Center, New York State Department of Health,
Albany, and Department of Health Policy, Management and Behavior,
School of Public Health, University at Albany, State University of New
York, Albany (M.-J.S.); and Human-Media Interaction Group, University
of Twente, Enschede, The Netherlands (F.N.).
This study was supported by the BrainGain Smart Mix Programme of the
Netherlands Ministry of Economic Affairs and the Netherlands Ministry of
Education, Culture and Science and by the Information and Communication
Technologies Coordination and Support Action “FutureBNCI” within the
FP7 framework, Project Number 248320.
The authors declare no conflict of interest.
Correspondence: F. Nijboer, Human Media Interaction, Faculty of Electrical
Engineering, Mathematics and Computer Science, P.O. Box 217, 7500 AE
Enschede, the Netherlands; E-mail: Femke.Nijboer@utwente.nl
C 2012 Neurology Section, APTA.
Copyright ISSN: 1557-0576/12/3602-0094
DOI: 10.1097/NPT.0b013e31825064cc
94
INTRODUCTION
Definition
A brain–computer interface (BCI) is a system that allows its user to control a machine (e.g., a computer, an automated wheelchair, or an artificial limb) soley with brain activity
rather than the peripheral nervous system.1,2 Control with a
BCI is initiated when a user performs a specific mental task. A
typical BCI combines neurophysiological measurement technology with machine learning software to automatically detect
patterns of brain activity that relate to this specific mental task.
In most BCIs, the user is provided with a small selection of
mental tasks (e.g., imagined movement of left hand, right hand,
or foot) that the system is trained to detect. Once the system
detects that the user has been performing one of the mental
tasks, the corresponding actions are automatically triggered
(e.g., move cursor left, move cursor right, or click cursor). The
following subsections will provide a short overview of relevant
aspects of the technology and current state of the art, leading
up to the discussion of ethical aspects.
Measurement Techniques
Implementation of a BCI requires brain activity to be
measured. Technology to do so can be categorized as either
invasive, such as subdural or epidural electrocorticography or
implantation of a multielectrode array, or noninvasive, such
as electroencephalography (EEG), magnetoencephalography,
functional magnetic resonance imaging, or near-infrared spectroscopy. All of these technologies provide some representation of the brain’s activity. The choice of a specific method is
often determined by a balance between factors such as health
risks, user comfort, signal quality, portability, and cost. “Wet”
EEG, which involves the use of conductive gel to improve
the electrode’s connection to the surface of the scalp, is still
the most popular noninvasive method for clinical BCI applications. However, low-cost wireless and “dry” alternatives are
emerging rapidly, often aimed at less-critical consumer applications, such as BCI games and entertainment for healthy
users. BCI technology brings many promising applications in
a variety of clinical and nonclinical areas. However, at present,
clinical success with BCI is predominantly achieved with prototypes in research laboratories.
Applications
Clinical applications of BCI can be roughly divided
into two categories. The first category aims at providing a
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Ethical Issues in Brain-Computer Interface Research, Development, and Dissemination
technological alternative for a user’s lost function and can be
considered a form of assistive technology. The second category aims at rehabilitation of the user’s own neural pathways
to restore the lost function (see also Daly and Wolpaw3 ).
In the category of assistive technology, invasive BCI systems have been reported as specialized at real-time decoding
of motor functions in nonhuman primates, sometimes even reproducing the decoded motor activity with a cursor or robotic
arm.4-6 Eventually, such technology may develop into neuromotor prostheses for humans with motor disabilities. One
successful case has been reported in which neural cursor control was achieved by a person with tetraplegia, who had a
multielectrode array implanted in the motor cortex.7
Noninvasive BCI systems, mostly EEG-based, have also
been investigated for various assistive applications, of which
one of the most popular is communication. Spelling applications, for instance, relying on the so-called P300 response,
enable a user to “mentally type” symbols on a screen by focusing on specific symbols in a matrix of randomly flashing
symbols (usually letters, punctuation marks, and numbers).8,9
Variations of this application have also been presented for use
in the auditory domain,10 which may be relevant to users with
a progressive neurodegenerative disease affecting vision in its
later stages (e.g., amyotrophic lateral sclerosis [ALS]). One
of the key problems in these types of communication applications is speed. To achieve sufficient reliability of the system,
repeated measurement of the P300 response is necessary, resulting in reduced speed of the application.11 Attempts have
been made to overcome this lack of speed by adding artificial intelligence to the application in the form of automatic
word completion or error correction from a dictionary (see,
for instance, Ahi et al.12 ), or even entire graph-based sentence
databases (such as described in Geuze et al.13 ). This increases
throughput of language at the cost of verbal freedom. In addition to communication applications, prototypes for wheelchair
control14 or three-dimensional cursor control15 have also been
reported.
In the category of applications for rehabilitation, various results have been reported with the use of an invasive
or noninvasive BCI for rehabilitation of gait after stroke.16-18
In these applications, attempted or imagined movement is detected by a BCI and used to artificially move the user’s limb
with a robotic aid or by functional electrical stimulation of
the muscles. This movement provides the user with proprioceptive and visual feedback of the limb following his or her
intention, which, in turn, stimulates neural plasticity and then
allows the user’s own neural pathways to regain control of the
limb. Furthermore, BCI is being investigated as a therapy for
various cognitive disorders. This is typically done by feeding
back functional magnetic resonance imaging measurements to
subjects in real time, allowing them to self-regulate a specified
area of the brain. Initial studies have illustrated a wide variety of potential applications in treatment of pain, depression,
schizophrenia, tinnitus, emotional disorders, and memory.19-21
Besides current and potential clinical applications of
BCI, applications are also being developed for game and entertainment purposes.22 Because of the large number of potential
users of such applications, this likely will increase research and
development resources, from which clinical applications may
benefit as a side effect. Moreover, recent work by Münssinger
et al.23 on a BCI painting application illustrated that even entertainment BCIs may have a certain degree of clinical relevance
by improving the user’s social and expressive potential.
Present Research and Development Issues
The fact that BCI technology for clinical use, although
promising, still resides predominantly in research laboratories
can be explained by several factors. A key factor is the socalled signal-to-noise ratio in a given measurement modality,
where the definition of noise includes any signal (including
brain signal) that is not of interest to the discrimination of
responses to the specific mental tasks used to control the BCI.
Both speed and reliability of a BCI system are dependent on
this signal-to-noise ratio. In addition, the signal of interest
typically varies greatly among and within subjects over time.
This makes the quality of a BCI for a specific individual at a
specific time very difficult to predict and may lead to frustration
for the user when the BCI suddenly stops working. It also
means that most BCI systems require training or adjustment to
each subject individually. Finally, artifacts may be contribute
to initial success with a prototype but to a difficult transition
into clinical applications. Especially with EEG-based BCIs,
signals originating from sources other than the brain, such as
eye movement and muscle activity, may (sometimes without
being noticed) boost BCI performance. When the transition
is made from healthy users (which is typically the first group
to try a prototype) to persons with disability, some of the
performance previously achieved may be lost as a consequence
of physical conditions. Much of the ongoing BCI research is
focused at finding solutions for the issues described previously.
Ethical Aspects
In the future, BCI has the potential to impact not only
individual users but also society as a whole. The research and
development of future BCI applications such as BCI computer
games, neuroprostheses, online cognitive research, neuromarketing, or cognitive enhancement2 inevitably raise ethical and
societal challenges, and a public debate on rights and restrictions is to be expected. Apart from being important in their
own right, these ethical debates may substantially influence
public acceptance of BCIs and related neurotechnologies.
Nascent neuroethical debates have identified several topics of importance to BCI research, development, and dissemination (see Clausen,24 Haselager et al.,25 Tamburrini,26 Tamburrini and Mattia,27 Fenton and Alpert,28 and Walter29 ). Some
of the ethical issues are well known in medical research and the
medical device industry. However, there is also a category of
issues that are relatively unique to BCI research. Some issues
such as the complicated process of obtaining informed consent
from persons with locked-in syndrome (LIS) can readily be
identified,24 whereas other issues may be less obvious or concrete (e.g., privacy and mind-reading). One basic distinction
that permeates ethical debates on BCI concerns the difference
between research and treatment. Ethical issues depend, at least
in part, on whether the aim is to apply approved technologies
for treatment or to develop technologies. Especially in cases
where treatment and research interests conflict, important ethical concerns can arise (see the “Jane” case scenario below).
C 2012 Neurology Section, APTA
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In an effort to triage issues according to technological
imminence and ethical novelty,30 we set out to identify and disentangle ethical issues related to BCI use in four case scenarios
that were inspired by current experiences in BCI laboratories.
Six panel members from various BCI laboratories and companies discussed each case scenario in the workshop on “Ethical
Issues in BCI Research, Development, and Dissemination,”
which took place at the 4th International BCI Meeting (Asilomar, California, 2010). Results of the discussion are reported
in this article.
We have chosen to discuss ethical issues, driven by the
case scenarios, in an attempt to illustrate how issues relating
to moral responsibility can, in different ways, confront researchers, clinicians, and developers with backgrounds in any
of the various disciplines typically involved in BCI research
or application. Because the case scenarios are related to issues
confronting BCI teams now (cases 1–3) and potentially in the
near future (case 4), they may also provide challenging material for analysis by those interested in the more theoretical
ethical debate on neurotechnologies (such as BCI and deep
brain stimulation).
CASE SCENARIOS
“Jane”
Jane is a 46-year-old housewife who has had the neurodegenerative disease ALS for 10 years. She lives at home and
has a full-time staff of caregivers. Since the onset of locked-in
syndrome 1 year ago, she has not been able to communicate
in any way. She has a legal representative who enrolled her
in tests with noninvasive brain-computer interfaces. The researchers using noninvasive BCI say they can see that Jane is
making an effort but that they are unable to reliably decode
Jane’s brain activity. Jane’s husband, who is eager to communicate with his wife again, has read about invasive BCIs in the
media and would like to try this method. He asks the BCI team
whether his wife could be considered for brain surgery.
Jane’s case illustrates BCI research with the most vulnerable participants, namely those who cannot communicate.
In such situations, a surrogate decision maker or legal representative is needed to represent the participant. Ethics in this
regard are partially codified by law. There are different international regulations specifying when a person is considered to
be legally incompetent and who should then be the legal representative. In the United States and the Netherlands, a close
relative is a preferred representative, whereas in Germany the
preferred representative is a neutral person. Such differences
between countries prevent a straightforward global discussion
of the ethical aspects of BCI. Other legal issues include the
liability of research teams. Currently, initiatives are under way
to systematically gather information about international legal
practices in relation to neuroscience and neurotechnologies
(see, for example, Nadelhoffer31 ). Furthermore, depending on
national legislation, a conflict of interest may occur when close
relatives legally represent a person who is unable to communicate. Caregivers and family members tend to underestimate the quality of life of persons with disability32 and may
choose not to let their loved one “endure” additional BCI training. Alternatively, caregivers and family members may be so
96
desperate to communicate with their loved one that they would
accept just about any intervention offered to them.
The second topic raised in Jane’s case is how a BCI team
should reply to the request from the husband of a person with
complete locked-in syndrome (CLIS) to try a BCI intervention, assuming that the legal representative (if this is not the
husband himself) also shows an interest in the BCI intervention. It is common for BCI research laboratories to receive such
requests for intervention from people (when not yet CLIS) or
from their legal representatives. Researchers may also have an
interest in working with persons with CLIS, for example, for
understanding commonalities and differences between healthy
user groups and user groups with disabilities, thus creating a
situation of mutual interest between potential user or representative and researcher. Despite their mutual interest, both
parties often do not share the same goal. Motivation from a
research perspective can conflict with a therapeutic interest,
sometimes leading to a “therapeutic misconception” of the
subjects participating in the research. Subjects then “fail to
distinguish between clinical care and research and to understand the purpose and aim of research, thereby misconceiving
their participation as therapeutic in nature.”33 When research
is confused with therapy, the participants or their legal representatives might fail to make decisions that are in the best
interests of the participants; in addition, researchers might not
adequately understand the motives of their participants.
From a broader perspective, there is also another ethical aspect to BCI treatment and research. At present, any BCI
intervention would draw from scientific resources, for which
responsibility lies with the researcher or the research group. A
moral aspect of this responsibility yields a balancing act between the freedom and well-being of the individual versus that
of the public. Because of typical interindividual differences
between BCI users, resources spent on improving a system for
a single user do not necessarily improve BCI for other users,
whether these are individuals in the same disability group or
in any of the other potential BCI target groups. Moreover,
the balance between individual and public welfare may be
skewed if pressure is put on access to experimental assistive
technology by users who face the prospect of communication impairments or physical disabilities. A similar pressure
was observed regarding experimental medication for acquired
immunodeficiency syndrome, which led to public debate and
lawsuits concerning the public right to experimental treatment
(see, for example, Richman34 and Leonard35 ).
“Nigel”
Nigel is a 51-year-old research scientist who has had
ALS for 11 years. He has used a P300 BCI home system
for 4 years to communicate with his family members and for
professional purposes with his laboratory colleagues. In recent
months, he has dramatically reduced his use of the system and
appears to be losing the capability to control it. The BCI team
has noticed the decline and is trying hard to determine whether
the algorithms need to be adapted.
Unlike the first case scenario, Nigel is able to communicate. Persons with LIS like Nigel may also have a legal
representative who must give the legally necessary informed
consent. In addition, a person with LIS may still be able to give
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assent. Where this is possible, even by only signaling “yes” via
eye blinks or other muscle twitches, researchers must seek that
assent in addition to the consent of the legal representative,
and dissent should be respected.25,36
Second, the information regarding what to expect from
a BCI system is crucial for giving informed consent. In this
case scenario, the subject should have been informed about a
possible decline in BCI performance, but managing expectations of a BCI proves to be difficult. Although a BCI system,
in principle, yields numerous useful applications for a user,
factors such as intersubject differences and the brain’s plasticity make it hard to predict BCI success for a specific user.
The multidisciplinary nature and typical size of a BCI research
team contributes to this problem. Various members of a team
may assess expectations of a system differently. Haselager et
al25 point out the similarity with other interdisciplinary teams
working in similarly demanding situations, such as intensive
care or mental health care. Furthermore, BCI performance may
be related to physical decline.37 If this is the case, informing
the user with disability about BCI expectations implies that
information is also provided regarding progress of the disease,
which the person may not (yet) want to know about.38 Finally,
overly enthusiastic media coverage about BCIs could heighten
an individual’s expectations of BCI, further undermining informed consent.39
A third issue that arises when visiting persons with severe paralysis or locked-in syndrome at home is that BCI
training inevitably interferes with their care and daily life (and
the lives of their family and/or caregivers). This is a factor that
researchers should include in moral considerations. For example, a person with LIS who has phantom limb pain reduced
her morphine intake on days when she was training with a
P300 BCI, because she knew that morphine could reduce detection of the P300. Participants may opt to accept discomfort,
changes in care schedules, or even pain to be able to work with
the BCI. For this reason, the interference of BCI with daily life
and care is a potential ethical concern. Information about the
extent of interference with daily life is crucial for weighing
positive and negative effects in making decisions about BCI
intervention. Participants in BCI studies often report feeling
positively challenged by training. For example, subject H., who
participated over 2 years in three BCI studies, stated that he
looked forward to every training session, because he knew he
could “work with his head” and that he was mentally as healthy
as other people.40 A recent study showed that most participants
were highly motivated throughout BCI training and their mood
was often good before training.41
“Ben”
Nine months ago Ben had a stroke, resulting in paralysis of his right arm. He has regained some function in his
arm after months of extensive motor rehabilitation, and Ben’s
doctor asked him to enroll in a study that investigates whether
BCI neurofeedback could accelerate Ben’s recovery. Ben has
difficulty understanding what the doctor is asking of him (he
has minor cognitive impairment), but he trusts his doctor.
Ben’s case refers to more recent BCI studies, which investigated the effects of neurofeedback training on the rehabilitation process after stroke.3,16,42-44 The combination of acutely
ill and vulnerable participants demands an especially careful
evaluation of risk and benefit, the process of consent, and the
permissible treatment of control participants.45 The question
could be raised whether Ben, given his cognitive impairment,
is really the most suitable subject for the study. In this situation, merely presenting Ben the option of BCI intervention
may already carry some coercive weight. The issue of coercion is not unique to BCI and has been empirically addressed
in the literature.46 Furthermore, this case emphasizes the need
for clear inclusion and exclusion criteria for any study to be
performed with participants in possible need of BCI.
A second issue relates to possible side effects of BCI
intervention and, more specifically, neurofeedback training.
No adverse side effects of BCI intervention and training have
been reported, but no systematic research exists on this topic.
Some BCI teams exclude study participants with epilepsy,
which may be of relevance in studies involving flickering visual stimuli at specific frequencies and high contrasts, such as
the stimuli sometimes used to evoke a P300 or SSVEP (steadystate visual evoked potential) response. In a neurofeedback
study, Hoedlmoser et al.47 noted an impact of sensorimotor
rhythm training on sleep and declarative learning. Their training paradigm is very similar to a paradigm regularly used in the
BCI community.48,49 Regarding the use of the brain’s plasticity
for obtaining or improving BCI control or rehabilitation, one
of the panel members remarked that if we can do any good, we
can certainly also do harm. The question here is: how different
is mental training in BCI from any other forms of training with
which we are already very familiar (e.g., driver training or subject preparations for psychological experiments), and are any
of these differences cause for ethical concern? We recommend
that in future clinical trials all positive and adverse side effects
be systematically investigated.
Beyond rehabilitation of gait after stroke, the principle of neurofeedback or self-regulation is being investigated
for treatment of various neurological or cognitive disorders,
as discussed in the introduction to this report. The increasing number of potential applications in this therapeutical area
brings us into a different domain of ethical questions, regarding identity and change of personality and self-perception.26,50
When, for instance, BCI is used for rehabilitation of an emotional disorder, one could wonder how this affects personality,
albeit as a side effect or as the main effect. A similar type
of neurotechnology that is currently being investigated for a
variety of diseases such as psychiatric disorders, Alzheimer’s,
and Parkinson’s disease is deep brain stimulation. The ethical debate surrounding deep brain stimulation technology is
addressing similar issues of identity and personality.51,52
“Thomas”
Thomas is a 30-year-old air traffic controller who was
told by his boss that starting this month he would have to undergo attention training by wearing a new neurotechnological
tool that provides him with neurofeedback. Thomas does not
know exactly what the device does, but he feels that his attention has somewhat improved since he started training. The
explanation that Thomas was given about the new tool was
that it somehow reads his brain, so he is sometimes afraid the
tool can also read his thoughts. Also, last Monday Thomas got
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a lecture from his boss, who said he could see that Thomas
most likely had been drinking alcohol on Sunday night.
The scenario of Thomas (albeit somewhat futuristic)
touches upon more philosophical topics such as extended28
and enacted mind,29 but most importantly it raises concern for
mind reading and privacy. As this case scenario illustrates, employers may be able to gain more information than had been
agreed upon when they require an employee to use a BCI system. Furthermore, the subject may be completely unaware of
the extent of information that is being obtained from his or her
brain.
In this case, the employer was able to discern the fact
that the subject might have been drinking the night before, but
more generally a BCI system may be able to reveal other psychological states, traits, and mental health vulnerabilities.53 It
may not be in an individual’s best interest to have this personal
information available to others, especially an employer, and
workplace discrimination could be a concern. It could be seen
as a violation of a person’s right to privacy. Furthermore, the
case scenario raises concerns about social stratification and
brain enhancement.54,55 If brain enhancement does become
effective and popular, there could be pressure to enhance one’s
brain to keep up with the competition. Barriers such as cost
could prevent some people from accessing this enhancement.
This issue, though complicated, is not unique to BCI and is
further discussed elsewhere.25,26,30,53
SUMMARY
BCI may lead to useful technologies for humankind but
at the same time present significant ethical and legal challenges. The challenges are due to several factors: BCI is a
rapidly growing research area with potential future applications of great daily significance, for both medical and regular
users, that is bound to attract the attention of media and commercial enterprises.
In the four case scenarios, we have identified ethical
issues related to the application of BCI for users with disabilities and healthy users. Issues typical to the field of BCI relate
to working with sensitive user groups, dealing with technological complexity, and handling multidisciplinary teams. We
illustrated that when treatment and research interests conflict,
ethical concerns arise. Managing the expectations of this novel
technology is important on different levels, ranging from individual users to legal representatives to the public (via the media). We encourage researchers to facilitate ethical and public
debate and keep expectations in line with achievements, because the future success of both BCI research and commercial
applications will rely on public acceptance of the technology.
Practical recommendations from the panel members
consist of creating more awareness of ethical aspects in the
BCI field, which involves reaching members of all disciplines
in a typical BCI multidisciplinary team. To facilitate discussion and sharing of information on ethics, we recommend the
organization of an ethics workshop or discussion group in future field-specific conferences. Moreover, we suggest inviting
ethicists and philosophers to participate in this dialogue. We
hope that these recommendations, as well as this report, will
contribute to the ability to identify and address pressing ethical
98
issues as they appear in the rapidly progressing BCI research
and commercialization.
ACKNOWLEDGMENTS
The authors thank Jonathan Wolpaw and Leigh
Hochberg.
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