tilburg research
tilburg research
research magazine
Facing up to new technologies
The transparent citizen • Technology, Orwell and Kafka • Embryo
selection: who decides? • Minister Hirsch Ballin on technology and
values • Thwarted by patents • The evolution of TILT
www.tilburguniversity.nl/tilt
Understanding Society
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Tilburg Research - 2008, volume 5, number 4
Preface
Innovative technologies such as ICT, biotechnology, and
nanotechnology, have a huge impact on society. Regulating
these technologies is extremely complex. The research
conducted by the Tilburg Institute for Law, Technology, and
Society (TILT) addresses regulatory issues regarding new
technologies and approaches regulation from a multidisciplinary perspective, since each approach raises unique fundamental questions. The multidisciplinary background of TILT
researchers (jurists, public scientists, ethicists, sociologists,
and technologists) creates a unique opportunity for multidisciplinary research into how technology can best be regulated.
Besides large projects such as FIDIS (Future of Identity
in Society), PRIME (Privacy and Identity Management in
Europe) and Regulating Biotechnology. Towards Effective
Regulatory Design (an NWO PIONIER project), smaller
research projects are carried out in the areas of, for example,
privacy, intellectual property, identity management, online
personalisation, biometrics, nanotechnology, and geographical information.
excellent overview of socially relevant questions that matter now. Charlotte van Ooijen, for example, gives a socially
relevant vision on the use of geographical information within
our GEOgov project, and Rachel Marbus conducts research
into identity management in social network sites. In the
area of biotechnology, Naveen Thayyil works on the regulation of genetically modified organisms (GMO), and Simone
Fennell is occupied with research into the regulation of
biobanks. Jelle van Veenen and Nadezda Purtova both conduct research into different kinds of regulation; Jelle is looking into online dispute resolution and Nadezda searches for
solutions to regulate propertisation of personal data.
With the interviews in this edition we aim at painting a
picture of the many ways in which TILT conducts scientific
research with a focus on technology regulation. We have
chosen to dedicate the larger part of this magazine to our
young PhD researchers. After all, PhD research provides an
Han Somsen
Chairman of the Tilburg Insitute for Law, Technology
and Society
Tilburg Research
Tilburg Research is a magazine for special-interest groups about research at Tilburg University,
located in the southern Netherlands. Tilburg
University specialises in the Social Sciences and
Humanities.
18
26
32
The link between fundamental questions and cross-boarder
scientific understanding is our core interest. Only by gaining
a better insight into the strategic questions and developments in the areas of law, technology, and society, can we
actively take part in the public debate.
Layout and graphic design Beelenkamp
Ontwerpers, Tilburg
Printer Grafische Groep Matthys
FEATURES
2
Technology is not something that
happens to us
By Leon Heuts
12
Embryo selection is too important
for ad hoc decisions
By Marga van Zundert
18
Vague profiles are detrimental
to Internet users
By Marion de Boo
26
Thwarted by patents
By Enith Vlooswijk
32
Privacy: refuge of evil or oxygen
for survival?
By Tineke Bennema
Colophon
Publisher Office of Public and External Affairs,
Tilburg University
Editors Corine Schouten, René Voogt
Photos Cover photo: Iris scan at Schiphol
Airport, Michael Kooren / Hollandse Hoogte;
TILT members inside: Ben Bergmans
Translation Taalcentrum-VU Amsterdam, Vivian
Carter, Morag Goodwin
12
Columns
6
Who (or what) am I?
By Kevin Warwick
17
Values as point of departure
By Ernst Hirsch Ballin
23
Code as law
By Roger Brownsword
31
Virtual worlds, virtual property
By Dan Burk
ON TILT
7
16, 30
There are important things at stake
NEWS
Tiber researchers
Throughout this issue by René Voogt, Corine
Schouten
1
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Tilburg Research - 2008, volume 5, number 4
Tilburg Research - 2008, volume 5, number 4
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Professor Corien Prins on technology, Orwell and Kafka
‘Technology is not something
that happens to us’
“Orwell? We’re there already, aren’t we? We’re already living in
Orwell’s 1984. At least, there are cameras everywhere and we are
being constantly watched.”
One wouldn’t expect it following a statement like this, but in the
future Corien Prins, Professor of Law and Technology, wants to think
about technology in a positive way, because technology offers many
opportunities. The only problem is, according to Prins, that we often
have such a staggeringly naive way of dealing with it.
By Leon Heuts
Without any reflection as to the
consequences, large quantities of
data are being stored and linked up
to other databases, and sensitive
techniques, such as biometrics, are
being introduced. In everyday life,
technology is playing an increasingly
important role, while the unthinking
introduction of some technologies
is making us increasingly dependent upon them and is threatening
both our civil rights and personal
freedom. Prins: “One day this will
go wrong, I’m sure of it. You can
compare it with the credit crisis.
Gathering and linking data is highly
speculative, just as those financial
constructions proved to be. We think
we can analyse and control reality by
keeping all telecommunication data,
digital patient files, the electronic
child record, etc., but is that really
the case? Moreover, we are making
ourselves almost completely dependent on technology and technology
is also making us more and more
vulnerable. To an increasing extent
we are linking systems to each other.
Then if something goes wrong, all
the systems will fall over like dominos. Just as in the present financial
crisis.”
One day this will go
wrong
“This doesn’t mean I’m against
linking databases. It can be very
convenient. There is no doubt that
an electronic child record may help
to keep an eye on a child at risk and
to intervene if the child is in danger.
That’s fine. But a record like this
has to be introduced with proper
precautionary measures. If various
institutions can just link information
together without any agreements
about coordination, responsibility
and central supervision, then all
sorts of problems can arise. Imagine
there is an error in the file, and you
want to rectify it? Where do you turn
if all the agencies point the finger at
each other?”
This is going beyond Orwell, Prins
agrees. This is more like Kafka.
‘Someone must have been telling
lies about Josef K., because without
Photonews / Hollandse Hoogte
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Tilburg Research - 2008, volume 5, number 4
having done anything wrong, one
morning he was arrested’ is the
oppressive first sentence of The Trial.
In the novel the protagonist K. tries
to clear his name. In fact, he doesn’t
even know what he has been accused
of. He gets lost in the labyrinth of
law and regulations; he doesn’t know
where to go and each agency refers
him to another. Prins: “Orwell is just
front – the cameras constantly watching us. But there’s a whole world
concealed behind the cameras. Clever
cameras – which recognize body
features and aggression, for instance
– record information. In this way databases are created that can be linked
to other databases. This makes data
mining possible – the automated discovery of patterns and relationships
in large quantities of data. Pattern
recognition makes it possible to filter
out ‘types’ of people – patterns in fact
which can be identified as risks. But
the extent to which these types or patterns actually correspond with reality,
with concrete individuals, is extremely questionable. If you are identified
as a suspicious type, then it is still
uncertain whether you have all the
characteristics attributed to that type.
And how can you clear your name if
there is no supervision of large-scale
automated processes of this kind?
This is Kafka: there is no longer any
source. All the agencies refers to each
other. If something goes wrong, you
no longer know where to turn.”
The Dutch electronic child record is
an example. In the future this record
will be linked to a so-called reference index. Dozens of municipalities
and regions are already working
with a reference system. From 2009
Tilburg Research - 2008, volume 5, number 4
Provided it is introduced
properly, technology can
strengthen democracy
it will be implemented nationally.
This system works on the basis of
warnings passed on by social and
care workers working for various
bodies. If there are two or more
warnings, all care workers involved
will automatically be sent a message, with the child’s contact details.
Prins: “What if a warning is passed
on as the result of a human error of
judgment? The criteria for passing
on a warning that a child is at risk
have not been defined. Each care
worker sends a warning on the basis
of his or her own judgment. It may
have to do with a completely innocent event. But if there is a warning, care workers are forced to take
action since the child has been characterized as being at risk. As a result,
these care workers lose part of their
autonomy, namely the capacity to
make an independent professional
judgment. They cannot say: ‘I know
that child. We don’t need to take a
whole series of drastic measures.’
The system sends reminders as well:
if you haven’t done anything after a
week, another message is sent. And
so on. At the same time, the fact
that certain signs are identified says
nothing whatsoever about the quality of the care offered. Obviously all
sorts of things can still go wrong.”
Corien Prins. Photo Ton Toemen
Prins: “When I started out as a
researcher in the mid-1980s, the
introduction of technology was still
in its infancy. We were still talking
about software protection. Now we
have seen what a huge impact technology can have. Technology really
does provide opportunities, I’m convinced of that. Provided it is introduced properly, it can strengthen
democracy. For example, a technological development like the internet,
with the possibility of interaction,
can be a vast improvement in communication between government
and citizens. But if that is what we
want, we have to deal with technology in an adult way. Now we too often
think: is it possible? Then let’s do it!
Is an electronic child record possible?
OK, let’s do it! Is an electronic child
record with reference index possible?
Great, let’s introduce it. But especially now that people can automatically be categorized as types by data
mining and pattern recognition, we
need to be very careful. For instance,
we must realize that this means our
past may continue to pursue us.
If preconditions cannot
be met, we should not
introduce the technology
You see this with systems in youth
care where warnings and therefore
also information about a ‘type’ of
child are kept until the child is
23 years old, and sometimes even
longer. Once again, if this leads to
fewer children slipping away, then
it is a good thing. But think about it
before introducing it. This is rather a
5
rough instrument; however brilliant
the technology may seem, it is an
illusion that preventive policy could
be introduced for each unique child.
Characterization is always generalization.”
“Technology is not neutral. It’s not a
black box. The criteria we use to generalize are influenced by the times
in which we live. We are now living
in an era in which ‘prevention’, ‘early
warnings’ and ‘intervention inside
the front door’ are important themes.
This may change again, but the technology we introduce now for the sake
of prevention will remain. Therefore
we should make sure we build in possibilities for correction. And if this
precondition or other preconditions
cannot be met, then we should not
introduce the technology. For example, if the company to which the development of the Dutch public transport
chip card was contracted out refuses
to disclose the source code, then the
government should simply not cooperate with them. That’s it. We are not
completely at the mercy of technology.
It’s not something that just happens
to us. We can have democratic control
over its introduction and structuring
by clearly staking out what is allowed
and what isn’t, and what the crucial
preconditions are. As a researcher I
see this as my task. I want to bridge
the gap between the technophobes
and the mentality that says ‘if we
can do it, why not do it?’ Technology
entails risks. The important thing
is to examine them carefully and
to address them without losing the
opportunities the technology offers.”
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Tilburg Research - 2008, volume 5, number 4
Tilburg Research - 2008, volume 5, number 4
7
Column
Who (or what) am I?
By Kevin Warwick
Much of the philosophy that underpins western culture is
based on the ego – everything follows from the ‘fact’ that
‘I’ exist. But from a scientific perspective, because of what
is on offer in terms of the merger between biology and
technology, there is now a big question as to who, or perhaps rather what, am I?
ally does it - so that we can stop it doing it, before it even
starts! But who does the person become if the output of
their brain, and even signals deep within it, are not of their
own choosing? Can it still be called ‘free will’ if injected
signals deep within a person’s brain are actually instructing them what to do and what not to do?
We recently released news of our robot (called Gordon)
with a biological brain – referred to in the press as ‘rat
brain robot’. Essentially neurones are cultured on an array
of electrodes and linked to a physical robot body. The only
brain of the robot is the culture, consisting of approximately 100,000 neurones, and the only sensory input to
the culture comes from the sonar sensors on the robot.
But what is the brain thinking about when it goes to bed,
and who does it think it is when it is embodied in its robot
shell?
Presently we are in the process of connecting audio inputs
and outputs to Gordon’s electrodes, partly so that we can
teach Gordon to move in the direction we want him to, but
also it will open up the chance of a new form of communication. One of the first questions I wish to pose to Gordon
is “Just who, or what, do you think you are?” But will I be
satisfied when Gordon answers “42”?
Then there is my own experience as a Cyborg, with a 100
electrode plug in my nervous system, linking my nervous
system with the internet. I was able to control a robot
hand on another continent, directly from my neural signals, and actually ‘feel’ how much force the hand was
applying. My nervous system was extended over the internet, my body went where the internet took it. And in the
future if my brain is directly connected up with a computer
then who will I be? With multi sensory input and the ability to think in many dimensions, will my views on ethics,
morality and ordinary humans change?
Even now we witness patients with Parkinson’s disease
receiving a stimulating implant which marvellously
overcomes the effects of tremors and distonia. But this
implant also allows us to monitor what is going on deep
within the brain of the patient – to the extent of predicting
what the person’s brain is going to do, well before it actu-
Kevin Warwick is Professor of Cybernetics at the University
of Reading, where he carries out research in biomedical engineering, artificial intelligence, control and robotics. As well
as publishing over 500 research papers, Warwick is perhaps
best known for his experiments into implant technology. He
has been awarded higher doctorates (DScs) both by Imperial
College and the Czech Academy of Sciences, Prague and he
was presented with The Future of Health Technology Award
in MIT.
Tilburg Institute for Law, Technology and Society
‘There are important things at stake’
The Tilburg Institute for Law, Technology and
Society is not yet five years old, but the seed was
sown ten years earlier. Because TILT researchers
follow new technological developments closely, the
institute automatically evolves with them. What
motivates the researchers? “Wonderful and spinechilling things that shake law to its foundations.”
By Corine Schouten
TILT evolves
When was TILT founded? The
researchers themselves don’t really
know exactly. Many of them joined
TILT later and people who were there
from the beginning have the impression that TILT has been around for
much longer than just over four
years. It is true that the research
programme ‘Regulation in the
Information Society’ began in 2004.
Its subtitle, ‘Interaction between law,
technology (IT in particular) and
social relations’, reflects the essence
of TILT and its name. But actually
it all started ten years previously, in
1994.
“Corien Prins was the driving force”,
says Professor Bert-Jaap Koops; that
much is clear. A small research
group gathered around her chair of
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Tilburg Research - 2008, volume 5, number 4
Law and Information Technology at
the Department of Jurisprudence
and Legal History of Tilburg
University, including Bert-Jaap Koops
and Sjaak Nouwt. This was when the
police used to mark floppy disks as
evidence by stapling labels to them,
Ronald Leenes recalls. Information
technology (IT) was new to legal
scholars.
In the wake of the explosion of
technological innovations in society that followed the revolution in
IT, a growing number of questions
arose that demanded an approach
based on a variety of disciplines. The
research group steadily expanded to
include disciplines such as ethics,
public administration, sociology and
psychology, and researchers with
expertise in biotechnology and nanotechnologies also joined the team.
The result is a broadly-based, varied
and dynamic group of researchers
who work together on the basis of
their common fascination with new
technologies in society.
TILT reflects
New technologies are making an
increasing impact on society, sometimes in ways we do not appreciate.
Technology should therefore at the
very least be controlled to some extent
by law. However, according to TILT
researchers this does not always have
to be done by legislation. They would
prefer to see regulation, says Research
Director Ronald Leenes. The use of
technology can also be influenced by
self-regulation, by market forces and
by technology itself, for example DVD
players that do not accept DVDs from
other regions, access points which
refuse passes, etc.
Typical TILT research: Better
regulation for DNA databanks
DNA tests are used more and
more to identify suspects. But
the conditions for use of the
DNA databank managed by the
Netherlands Forensic Institute
are still not clear. In her Ph.D.
thesis, Merel Prinsen advocates
clear rules to protect privacy
and security. In her opinion, the
storage of DNA profiles should
depend on the gravity of the crime
and the status of the conviction
(whether or not a suspect can still
appeal). For example, for someone
suspected of bicycle theft the rule
might apply that the individual’s
DNA profile may not be placed in
the databank until the conviction is
final, whereas for a murder suspect
it should be available at an earlier
stage. The sliding scale should also
apply to the duration of the storage
of DNA data. Moreover, only the
DNA profile should be stored, not
the original DNA material.
Tilburg Research - 2008, volume 5, number 4
For TILT researchers the point of
departure is always social problems. “There are important things
at stake,” says General Director
Han Somsen, “wonderful things
and spine-chilling things. That is
what motivates us.” The right to
have a baby with the help of embryo
selection is one of these important
issues, one which affects many
people. But the public transport
chip card and the electronic patient
database are also important issues.
“We have to make choices”, says
Somsen. “As researchers, we have to
be involved.”
TILT focuses not only on protection
of citizens against unwanted use
of new technology, but also on the
designers of technology. Their philosophy is that ultimately technology is intended to make life better.
Sometimes we have to wonder if
technology is being constrained too
much. TILT combines both angles
by examining how technology can
be used.
TILT investigates
TILT researchers follow social developments associated with technology
very closely. Because they conduct a
great deal of research for the government and for the business world, the
researchers are compelled to go along
with the developments themselves.
In turn, this fuels pure scientific
research. TILT does draw a line with
respect to research commissioned by
third parties: it has to be challenging. A TILT report for the Ministry of
the Interior about the Netherlands in
2030 was challenging enough. In this
report, the researchers outlined a sce-
Typical TILT research: Making the
constitution technology-proof
Do new technologies also affect
our basic rights? Yes, say TILT
researchers Bert-Jaap Koops,
Ronald Leenes and Paul de Hert in
their study entitled Grondrechten
en nieuwe technologieën [Basic
Rights and New Technologies]. In
the Netherlands, the constitution
should be modernized because
it refers to technology that is outdated and because the law does
not take the development of new
technologies into account. For
example, in the section on the
right to inviolability of the home,
the phrase ‘intrude into the dwell-
nario in which protection of privacy is
given priority, and a scenario in which
safety and security are paramount.
This report is still regularly cited in the
Dutch media.
ing’ should be dropped, because
an individual’s private space is
no longer always a place between
four walls, but can also be virtual.
The right to protection of personal
details (Article 10, paragraphs 2 and
3) should be separated from the
general right to privacy (paragraph
1) to emphasize the independent
significance of this right. A technology-neutral formulation of basic
rights sounds good, but it would
not be good in practice, say the
researchers, because it would risk
being vague. This would risk weakening the legal protection.
TILT thinks ahead
Technology does not stand still and
TILT thinks ahead. There are plenty of
concrete ideas for future research, such
as finding answers to the fundamental
question of how to regulate a dynamic
environment. Perhaps we can prepare
regulation so as to be able to act immediately when the time is ripe, Ronald
Leenes suggests. Another issue that in
his opinion requires attention is the concept of privacy. Is privacy still a manageable concept now that social networks
are becoming increasingly important
rather than more traditional concepts
such as the inviolability of the home?
Perhaps in the future privacy protection
can be regulated more effectively on the
basis of the principle of non-discrimination and the principle of autonomy.
Han Somsen expects that another
exciting area will be the autonomy of
the brain. Even now the brain can be
influenced by implanted chips. Recently
a conviction was obtained in India on
the basis of an MRI scan. In the future
we may be able to hear without ears and
see without eyes. To what extent are we
still responsible for our own actions?
“The concept of causality will be turned
upside down”, Somsen predicts. “These
developments are shaking law to its
foundations.”
Typical TILT research: Citizens’ privacy is endangered
The terrorist attacks of the past
years have ensured that security
is high on the political agenda.
Technology plays a significant role
in security measures: for example,
the biometric passport, the use
of DNA profiles or the linking and
analysing of databases. However,
in the discussion on the conse-
quences for privacy, the way the security measures interact with each other
and reinforce one another seems to
be disregarded. In the book Van privacyparadijs tot controlestaat? Anton
Vedder presents an overview of the
current government security measures and those that can be expected,
and the consequences for citizens’
9
privacy. The consequences go
much further than we would
have thought possible or desirable until recently, he says. We
have to confront the pressing
question of how much privacy
we are prepared to sacrifice, as a
society, for our security.
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Tilburg Research - 2008, volume 5, number 4
Tilburg Research - 2008, volume 5, number 4
11
THE researchers of TILT
Orwell, Athens and
Soft Sister
As soon as it comes to
personal information, a smoke
screen goes up
Name: Charlotte van Ooijen
Education: Master’s degrees in Communication and Information Sciences, University of
Groningen, and Public Administration, Radboud University Nijmegen (the Netherlands);
Propaedeuse (first year) in Romance Languages and Cultures, University of Groningen
Research programme: GeoGov project, part of the RGI Research Programme (Space for
Geo-Information); TILT is a partner in the GeoGov project
Research: Placing location data about citizens
“
Due to the introduction of GPS we now know more
and more precisely where we are on the globe. However,
not only do we ourselves know where we are, but to an
increasing extent others are also able to discover our exact
location. Because mobile phones have become indispensable attributes of our lives, it is possible to determine where
someone is walking at any particular moment. A police
appeal texted to people who were present in the vicinity of
a crime is an example of the use of this technology. There
are CCTV cameras available with incorporated face recognition software which are able to register people’s every
move in public places. If I set out with my modern public
transport chip card, each time I use it it registers at what
time I am at a particular place.
Clearly, present technological developments enable others to find out exactly where we are. It is undeniable that
this information can easily be linked to other personal
data to create one big database. One party which benefits
in particular from this situation is the government. In
the future these developments may create new forms of
interaction between citizens and government authorities. Firstly, as the owner of data relating to my location,
the government might take a dominant stance and treat
me, as a citizen, even more emphatically as a dependent
subject. But the availability of all this information about
my location could also stimulate the government to offer
me, as a client, better service. ‘You are now in the vicinity of the town hall and your new passport is ready’, a text
message might inform me when I’m in town shopping.
A third citizen role the government might address is that
of ‘citoyen’ – a scenario in which citizens and the government enter into an ultimate kind of collaborative venture,
creating policy together while taking into account citizens’
locations.
The goal of my research is to analyse the impact of location aware technologies in relation to these three potential
roles of the citizen. The roles are connected to the Orwell,
Athens and Soft Sister scenarios which were developed
in earlier research concerning the electronic government.
Moreover, my research aims to contribute to the societal
debate about the possible consequences of these technologies and to give both policymakers and technicians advice
on the matters concerned.
On the basis of a number of case studies, for example a
study of cell broadcast which enables citizens to be sent
text messages in the event of a disaster, I will examine
what the objective of these technologies is, which citizen
role they dominantly appeal to and what added value they
aim for.
”
Name: Nadezda Purtova
Education: Law at Mari State University, Russia, International Exchange Student at Manchester
Metropolitan University (UK) and LL.M. student at Central European University (Hungary);
one-year scholarship for Social Science at the University of Leiden
Research: Property rights in personal data in a European perspective
“
Sometimes people ask me if I’m not too late with my
research project, since by now trading personal information is widespread. They imply that trade in personal
information is a bird that has flown. However, I like
to compare this with when the first cars came on the
market: at that point there were no traffic lights yet.
Regulation after the event is not a problem, though of
course it should not take twenty years.
Property is a very well-known concept with deep historical roots and developed legal traditions, but as soon as it
comes to personal information a smoke screen goes up.
Who is the owner of the information that I do my shopping twice a week at the local supermarket and that I
withdraw cash from the ATM at the station every Monday
morning?
The current developments in IT make it easy to record
and move large quantities of personal information. Once
this information has been collected and neatly filed in
the database, it can be used for various purposes without
much trouble. This is already taking place on a large scale
all around us, although we may not always realize it. It is
sometimes done secretly and not without danger that the
information may end up in the ‘wrong hands’.
Take the computer I bought yesterday, on which I
unthinkingly visited internet sites about the most exotic
countries in preparation for my holidays. Cookies recorded my surfing behaviour without my being aware of it.
Before long a wide variety of advertising and travel offers
to tropical destinations turned up on my screen.
My research will focus on the property rights of personal
information and the many angles they can be approached
from. It is interesting that in many cases the United
States and the European Union seem to deal with a common challenge of information privacy in different ways.
But are those differences a matter of choice or necessity within a given legal system? This is an issue within
Europe, too. Just consider the fact that every country has
its own definition of ‘property’, which does not make the
discussion on ‘propertization’ any easier.
How should European legal system deal with these matters? Is propertization a good idea for Europe? I will
attempt to find an answer to this question. I would like to
contribute to the public debate and provide input for the
creation of policy.
”
12
Tilburg Research - 2008, volume 5, number 2
Tilburg Research - 2008, volume 5, number 2
Biologist Eva Asscher is frustrated
about the letter written by former
Dutch State Secretary Clémence
Ross stating that selection of embryos against hereditary forms of breast
cancer and intestinal cancer was not
permitted. “Ross ignored the recommendations of the Dutch Health
Council on the basis of ethical considerations. Although these considerations were not clearly formulated,
illogical and partly irrelevant, I
thought it was indefensible that she
deprived prospective parents of the
chance of having a healthy child on
that basis.”
Photo L. Wauman / Inside
Embryo selection is too
important for ad hoc decisions
Who decides whether a technique like embryo selection is permissible
and if so who is permitted to use it? The government? Doctors?
Prospective parents? The church? Above all, TILT researcher Eva
Asscher wants the motives to be set out more clearly.
By Marga van Zundert
Asscher’s indignation was the reason
why she opted to examine the subject in depth as a post-doc researcher
at TILT. The main question in her
research project is: ‘How should
society deal with new technologies
which some perceive as medical
progress and others as scary or
even fundamentally unacceptable?’
Asscher: “Whatever your personal
view of embryo selection may be, it
may have consequences for society
as a whole. Obviously people have a
valid point in believing that embryo
selection brings us closer to a ‘brave
new world’ – a society in which diseases or disorder can be selected out
at will.”
Dissension
In the Netherlands, embryo selection
is permitted for incurable hereditary
diseases such as Huntington’s disease, Duchenne muscular dystrophy
and cystic fibrosis. Since recently the
technique has also been available
13
for hereditary forms of breast cancer
and intestinal cancer. Thanks to
embryo selection, women who have
seen many family members suffer
at close hand from breast cancer can
now opt for children without the
hereditary risk of the disease.
want to go as a society? Everyone
wants healthy children, but what
is healthy? And do we also want to
strive for maximum intelligence, or
a happy or peaceful nature? You can
have infinite discussions about these
things, which is why well-founded
arguments are so important.”
Everyone wants healthy
children, but what is
healthy?
Heartbreaking
Asscher is studying the regulation
of embryo selection in England
and the Netherlands. Since 1990,
in England the responsibility has
been in the hands of a special
authority: the Human Fertilization
& Embryology Authority (HFEA).
Decisions are made by an HFEA
council, over half of whose members
are non-professionals i.e. people
who are not doctors or scientists. In
the Netherlands, embryo selection
comes under the Special Medical
Procedures Act. This means that
policy is determined by the State
Secretary for Health. A guidelines
committee is now being set up that
will formulate criteria for embryo
selection. However, it is not yet clear
who the members of this committee
will be and what responsibilities it
will have.
However, each country steers its own
course and develops its own policy.
Even within Western Europe there
does not seem to be any common
thread in regulation. What is permitted and what is not varies very widely. In the United Kingdom, embryo
selection is permitted for over sixty
hereditary disorders. An embryo
may also be selected for tissue properties, so that stem cells from the
umbilical cord can save a brother
or sister with leukaemia (‘saviour
children’). Selection for gender is
not permitted unless there are medical reasons. In Germany and Italy,
embryo selection is not permitted at
all; yet Spain and France are fairly
liberal.
“I’m not looking for the country with
the best regulation”, says Asscher.
“I don’t even believe that there is
one method which is the best. The
main thing is that decisions should
be based on clearly formulated
grounds. Ultimately embryo selection involves a choice. Where do you
“The discussions at the HFEA are
public. Decisions made by the Dutch
State Secretary are not very transparent. There are no public reports of
the talks she has with her feedback
group. But one advantage is that
a State Secretary can make decisions relatively quickly. If the Lower
House has to make a decision about
something it takes a long time.”
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Tilburg Research - 2008, volume 5, number 4
And time can be important. In
England the HFEA gave official
permission for a ‘saviour child’, but
the decision was contested in court.
By the time the HFEA finally won
its case at the House of Lords, the
prospective mother was too old and
no pregnancy followed. During this
period other families went to the
United States and ‘bought’ their saviour children. “That is really heartbreaking”, says Asscher.
Is it actually possible at all for society to anticipate new technologies?
“Regulation must always be considered carefully, so we will always
be lagging behind what is possible
in practice. But these things are
too important to make decisions
about them on an ad hoc basis. If it
becomes clear that a technique will
offer new possibilities, permission
can be given to apply it when serious
disorders are involved, for instance.
But as soon as the technique has
been developed and the consequences are clear, it will have to be recon-
Perhaps we should
regulate the method of
regulation by law
sidered. Are we going too far? Where
do we place our boundaries? Perhaps
it would be a good idea to regulate the
method of regulation by law, so that
the decision will have a clear
and politically supported mandate.”
Tilburg Research - 2008, volume 5, number 4
Debate
This spring an acrimonious debate
about embryo selection raged in the
Dutch media. Asscher: “It was a very
interesting period. Suddenly the subject of my research was in the spotlight. Perhaps the most important
result was that now far more people
know that this possibility exists.” The
researcher herself also expressed her
opinion in a number of comments in
national daily newspapers. “I think
that as a scientist I can let my voice
be heard in the social debate, not
only because I like debating, but also
because by now I know quite a lot
about it.”
Embryo selection – also referred
to as preimplantation genetic
diagnosis (PGD) – can be used
to screen embryos for hereditary
disorders. Four to eight of the
mother’s egg cells are fertilized
outside the ovary (IVF) and in
three days grow into eight-cell
embryos in the laboratory. One or
two cells of each embryo are removed
and the DNA scree ned for the presence of the hereditary disease. One
or two embryos without the genetic
defect are placed back in the ovary.
Any other healthy embryos are frozen.
The doctor lets embryos with genetic
Who should decide about embryo selection?
• Martijn Breuning, Professor of
Clinical Genetics at the Leiden
UMC: “Embryo selection is sometimes a solution to a difficult problem. I regard the discussion about
it as a highly specialized one. As a
professional group, clinical geneticists want to leave it to the parents
themselves and the professionals.
The government must ensure that
there are enough well-trained doctors and good biology lessons, so
that people can follow these discussions.” (Source: Cicero, 21 June
2008, no.8)
• Henk Jochemsen, Professor of Ethics
(endowed chair) at VU University
Amsterdam and director of the
Lindeboom Institute: “In the first
place, in my opinion embryo selection should not take place at all.
But in reality it does, and therefore
What is embryo selection?
abnormalities die. The technique is
young and controversial, not only for
ethical reasons, but also because it is
unknown whether taking away cells
from the embryo may have consequences later in life.
15
proper standardization is needed.
I think the government’s proposal
is a good multi-tier regulation:
a central committee which will
assess the permissibility of embryo
selection, doctors and patients with
their own responsibility to consider
embryo selection within the given
framework, and a local ethical committee to discuss and assess individual cases.”
• The Netherlands Breast Cancer
Association’s working group on
hereditary breast and ovarian cancer:
“In our opinion prospective parents
of whom one partner is the carrier
of a gene mutation with a high risk
of breast and/or ovarian cancer
should be able to decide for themselves whether they want to turn to
PGD as a reproductive preventive
option. Intensive counselling and
supervision are a prerequisite. For
the prospective parents to arrive
at a well-considered decision, full
information must be provided
about the possibilities, the risks,
the rigours of the IVF route and
the psychosocial implications.”
(Source: www.brca.nl)
• Frank G. Bosman, Luce / Centre
for Religious Communication,
Faculty of Catholic Theology of
Tilburg University: “A committee
or employer can only formulate
boundaries for delicate medical
and ethical decisions of this kind
according to preset guidelines.
Then it is up to individual doctors
and prospective parents to make
appropriate and wise decisions.
Ethics are fluid. Laws are just the
opposite: they aim for universal
validity.”
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Tilburg Research - 2008, volume 5, number 4
Tilburg Research - 2008, volume 5, number 4
Column
NEWS FROM TILT
Values as point of departure
Launch of new European journal on law
and technology
During the international conference TILTing perspectives
held on 10 and 11 December 2008 at Tilburg University,
TILT researchers Han Somsen and Ronald Leenes, in
conjunction with Professor Roger Brownsword of King’s
College London, launched The European Journal of Law,
Ethics, Technology, and Society (Hart Publishing). This
academic journal is intended to be a fully-fledged counterpart of American journals in this area, in which European
solutions to universal problems will receive ample
room. ‘The introduction of the Lisbon EU agreement on
European basic rights is not running very smoothly, but
there are still some things that bind Europe. For example,
Europeans have different ideas about data protection than
Americans,’ Hans Somsen explains. ‘The American academic journals pay little attention to this.’
The journal will follow the Anglo-Saxon journal model in
applying a strict peer-review selection procedure, a practice that is still not standard for Dutch legal academic journals. The result will fill a gap in Europe: an interdisciplinary
journal for high-quality, agenda-setting research related to
technology, ethics, law and society.
Geertrui Van Overwalle, Professor of Patent Law
and New Technologies
In October 2008 Geertrui Van Overwalle was appointed
Professor of Patent Law and New Technologies at TILT.
She will contribute her expertise to current research on
the regulation of biotechnology, IT and nanotechnology.
In addition she will determine her own lines of research
associated with the question of how new technologies can
best be protected.
In biotechnology traditional patent law is used to protect innovations. As a result, pharmaceutical companies
have less and less room to develop their new products.
An alternative ‘open source’ regulation like that used in
IT would provide unprecedented possibilities for achiev-
17
ing a breakthrough in this impasse. In her research Van
Overwalle focuses not only on the legal aspects of alternative regulation, but also on the ethical and economic
aspects.
Professor Geertrui Van Overwalle has worked at the
university K.U. Leuven in Belgium since 1985 and also at
K.U. Brussels. She is also a member of many national and
international academic advisory committees and boards,
including the European Commission's Expert Group on
Biotechnological Inventions. Van Overwalle also works as
an expert for the European Parliament and the Japanese
Patent Office.
By E.M.H. (Ernst) Hirsch Ballin
TILT’s conference Tilting perspectives on regulating technologies in December 2008 reminds
me of a question which has
long occupied human minds:
do we regulate technology or
does technology regulate us?
This question is not explicitly
asked in the conference theme,
but it is implicitly answered.
The conference theme opens
with the comment that innovative technologies will change
society drastically. The question then raised is how we can
regulate these changes. This
is difficult, the organizers say, and demands a great deal of
expertise. New technologies lead to complicated and often
problematic regulation issues. It therefore seems that the
answer is that we are lagging behind reality and that regulation is the answer to the new technologies.
Perhaps it would also be interesting to try turning this
reasoning around. Instead of taking the technologies as a
point of departure, we could start with the social values we
consider desirable. Then we could ask the question which
technologies are required to realize these values. Since discussion of technology is always also a discussion of values,
we may just as well have the discussion about values before
the technology has been developed, instead of after.
The protection of societies – also a conference theme – is
well suited to this approach. One of the main questions is
how to regulate the gap between the haves and the havenots which results from the new technologies. Would it
not be interesting to approach this theme as well first and
foremost in terms of values? Instead of waiting for techno-
logical developments, we could take fundamental values
such as respect for human dignity, the equality of human
beings and social cohesion in the community as our point
of departure. These values could function as regulatory
principles to guide the imagination in relation to the new
technologies and their application. If these values are the
point of departure, then all the creativity of those attending
the conference will be mobilized to devise technologies that
can close the gap between haves and have-nots. The issue
of regulation is then not about control and constraint, but
about guidance and investment.
Obviously new technologies will not always provide solutions, not even for the problems they themselves have
caused. Nevertheless, present-day technologies show that
we can go a long way towards that goal if we put values
first. For example, virtual communities on the internet create social cohesion while that cohesion is under pressure in
the ‘physical’ world; and sometimes the exchange of data
between government bodies prevents citizens being left to
their own devices, literally because they remain out of the
picture. In the future robotics will enable people to live in
their own homes for longer, in their own familiar surroundings. New technologies in the shape of instant translation
computers – possibly as neural implants – may put an end
to language barriers between people. And so on, and so on.
These thoughts are only intended to stimulate. Moreover,
to some extent they run ahead of technological development. But to prevent us having to hold a conference in
twenty years’ time about the regulation of technologies
from a ‘lagging behind’ approach, perhaps it is to be recommended that occasionally we start out from the values we
consider desirable.
Ernst Hirsch Ballin is Minister of Justice of the Netherlands
and former professor at Tilburg University.
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Tilburg Research - 2008, volume 5, number 4
Tilburg Research - 2008, volume 5, number 4
Just looking something up on Google
is a familiar activity for most people,
but not everyone realizes that Google
is more than just a helpful tool for
collecting information. “Companies
like Google, Microsoft and Yahoo
silently collect vast amounts of information about their users’ online
behaviour”, says public administration expert and associate professor
Ronald Leenes of TILT. “Google
doesn’t link these data to you personally, but to your computer’s IP
address. This creates a comprehensive profile of every Internet user.”
Photo Peter Hilz / Hollandse Hoogte
‘Vague profiles are
detrimental to Internet users’
Privacy has long been associated with ‘Big Brother’, the all-seeing state which
spies on its citizens and keeps them under control. Not only governments,
but also a growing number of private agencies have their sights set on personal information in databases. In our Internet-driven society this threat is increasing rather than decreasing, according to researcher Ronald Leenes of TILT.
Leenes is investigating how Internet users themselves can regain control of
the accessibility of their personal data.
By Marion de Boo
No snow scooters
This kind of information is passed
on. Step one. Advertisers are starting
to offer more targeted and therefore
less irritating online ads so, on the
basis of their IP address, there are no
ads for snow scooters for people who
live in Spain. Step two is the manipulation of search actions. “Someone
who likes to read about expensive
cars and trips on the Internet has
a different profile to someone who
surfs to sites where you can borrow
money cheaply”, Leenes explains.
“And some IP addresses are fairly
easy to localize. In a relatively low
income postcode area advertisers
may stop offering various services.
You might not be able to order anything from Wehkamp anymore (a
Dutch mail-order firm, ed.), because
they think you are not creditworthy.”
Moreover, based on profile information it has obtained, an online bookshop may offer the same book to an
Internet user who apparently regularly orders expensive whisky online at a
higher price than to someone who it
thinks is probably less well-off. “We
call that price discrimination”, says
Leenes. “It’s nothing new in itself,
but the increase in scale and the
invisibility do merit attention.”
We are entering a
twilight zone
Modern information technology
makes it increasingly easier to gather
information about individuals and
to link it together and use it. If this
is done on the basis of a vague user’s
profile which has been drawn up
without your knowledge and which
may not even be correct, we are
entering a twilight zone. Leenes:
“You could be mistaken with someone on the Internet who happens to
have the same name, or with a housemate in the same student house. If
that person happens to be keen on
parachuting or is a chain smoker, he
could be refused health insurance.
If someone puts a photograph on
Hyves of a party where there are a
few drunken people and you happen
to be shown in that photograph as
well, this could have adverse consequences. Your job application may
be turned down because someone
wrongly associates you with public
drunkenness. Things like this happen insidiously, behind your back.
You are not consulted and therefore
you cannot defend yourself.”
19
Identity management
TILT does a lot of research in
these areas. Its clients include
the Ministries of Justice, Foreign
Affairs, the Interior and Kingdom
Relations, and Economic Affairs.
TILT also collaborates with the
Dutch Rathenau Institute and the
Telematica Institute. A team of about
twelve Tilburg academics, including
legal experts, public administration
experts, psychologists, sociologists,
ethicists and IT experts, are examining various aspects of what is now
referred to as ‘identity management’.
“An Internet user has various ‘digital
identities’, such as an email account
and a Hyves user profile”, Leenes
explains. “The way organizations
construct these digital identities and
link them to each other is what we
call identity management.”
In everyday life each individual plays
a variety of roles. You might be a
parent, an academic, a member of
a tennis club, a gardener. These are
partial identities. Usually the personal information which goes with a
certain role remains within that context. In a shop you don’t say where
you work and you don’t tell the neighbours everything you share with your
partner. “To maintain good relationships it’s essential to keep social contexts separate.” says Leenes. “Parents
don’t tell their children everything,
let alone the other way around. You
must be able to determine for yourself which part of your identity you
want to show, in what context, and to
whom.”
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Tilburg Research - 2008, volume 5, number 4
However, online the various partial
identities are merging to an increasing extent. In online interactions
we often release more information
about ourselves than is necessary.
Organizations maintain all sorts of
customer databases. “There is a tendency to link databases to each other,
which could eventually result in a
sort of superidentity in which you
may not recognize yourself any more
at all”, says Leenes. “At TILT we are
investigating what effects this has on
individuals, on society and on policymaking. I regularly surf the Internet
for my own research, for example
to find out how easy it is to access
information about making nuclear
weapons. Who knows what a strange
user profile I may have acquired! We
are working on a wide range of case
studies.”
More information than is necessary
In this discussion privacy is a key
word. “Privacy is a comprehensive
concept, and is therefore difficult to
define”, says Leenes. “To start with,
there is such a thing as domestic
privacy – the right to be left in peace.
You want to be able to sit in your own
garden without being harassed by
other people. But you also have the
right to determine for yourself to
what extent your personal details are
available to others and what others
can do with that information. This is
what we call informational privacy.”
Tax offices, educational institutions
and hospitals file data in automated
databases which other parties can
pilfer. Our many online identities
– in customer databases, at government agencies or on our own profile
pages – may also lead to privacy problems. “Insurance companies scour
patient sites full of personal information to take advantage of them”,
says Leenes. “And in its war against
terrorism and crime the government
is an enthusiastic user of the digital
traces we leave scattered here and
there.” But why would customers of
Amazon.com provide not only their
names and addresses but also their
credit card details? “Valuable information like this is vulnerable”, says
Leenes. “It happens quite regularly
that databases with tens of thousands
to millions of customer details are
lost or stolen. Credit card details can
be used for identity fraud. If Amazon
does not receive information like
this, they can’t lose it either. Banking
systems like iDEAL provide an
answer to this problem.”
‘We are trying to design
solutions to enable
individuals to operate
anonymously or under
pseudonyms’
In southern Europe in particular,
many consumers are apprehensive
about doing business on Internet,
for fear of fraud. If Internet companies can provide more guarantees
Tilburg Research - 2008, volume 5, number 4
that fewer personal details will be
kept and whatever is stored will be
in safe hands, then they can expect
their markets to expand considerably. Leenes: “As well as empirical
and analytical research, TILT also
carries out research into the development of technological instruments.
Ultimately we would like to give
Internet users more control over
their own personal details by means
of new technology. You want to be
able to determine for yourself who
has access to certain information and
on what conditions. In doing this
you have to keep contexts separate as
much as possible. We are trying to
design solutions to enable individuals to operate anonymously or under
pseudonyms, while still retaining the
possibility of making the individual
accountable, if necessary.”
These Privacy Enhancing
Technologies (PETs) make it possible
to create relations of trust online
without having to provide many personal details. Within TILT, Leenes
was project leader of the recently
concluded European PRIME project
– Privacy and Identity Management
for Europe – which focused on developing technological instruments of
this kind to protect Internet users.
During the three-year follow-up
project PrimeLife, Leenes and his
colleagues will concentrate on the
theme of ‘privacy in social networks
and collaborative workspaces’.
“Safeguarding privacy is a key criterion for good identity management”,
says Leenes. “Privacy-friendly
21
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Tilburg Research - 2008, volume 5, number 4
23
Column
identity management reduces the
risks of identity fraud and abuse of
data, and also gives service providers more guarantees that clients will
comply with agreements and that
something can be done about any
abuse of trust by users.”
Awareness of risks
In Leenes’s opinion, it’s high time
we did research on identity management and the way information about
individuals is distributed and abused
online. “Companies and government agencies are finding more and
more ways to monitor people, to discriminate them and possibly exclude
them from services. Our society is in
danger of becoming a control state.
I find that frustrating. Internet data
and telecom data have to be kept for a
long time. And constant observation
is conducive to the rise of standardized behaviour. Is it in keeping with
democratic rule of law if, in the
future, we all run around in circles,
because we know we are being constantly watched?”
Our society is in danger
of becoming a control
state
Many people have no objection to
their personal details being made
accessible to all, because they think
they have nothing to hide. “This is
a serious misunderstanding”, says
Leenes. “For instance, parents have
lots to hide from their children and
vice versa. Besides, the mechanisms
for collecting and using data are very
sophisticated and information that is
harmless now may lead to undesirable conclusions when combined and
taken out of context later on. It’s only
recently that people have started to
become aware of the risks of a life
online. Thanks to campaigns like
the [Dutch internet safety] campaign
Digibewust, people are gradually
changing their online behaviour to
some extent.”
Code as law
By Roger Brownsword
The invitation to write this piece arrived on a day when
I took the train from London to Cambridge, where I was
meeting a publisher to discuss a book project on human
dignity. Nowadays, access to (and egress from) the
Cambridge trains is through a turnstile that is operated
by the insertion of a valid ticket. But, it was not always so.
Once upon a time, the system relied on trust and the occasional ticket inspection. But, today, turnstile technology
has taken over; today, no ticket means no travel.
In another context but in a similar vein, legal scholars
have highlighted the way in which computer hardware or
software (like smart turnstiles) can be coded for a particular regulative effect. De facto, so some say, code is law.
And, provided that parties do not use technical coding to
overreach relative to their background legal rights (their
IP and contractual rights) then all seems to be well⎯or, at
any rate, all is well so long as the background legal entitlements are fair and reasonable.
When I boarded the train for Cambridge, the regulatory
arrangements were doubly transparent: I knew that it was
unlawful to travel without paying the due fare; and I knew
that the purpose of the turnstile system was to prevent
unauthorised free riding. In some IT contexts, there might
not always be this level of transparency. However, if the
use of code as a regulatory instrument is transparent, this
eliminates another possible line of objection. Is there anything left to be said against code?
We can hardly complain that regulators make use of
technology. However, if we value human dignity and if we
believe that the dignity of humans is expressed when they
choose to do the right thing, we might be concerned that
code is over-regulative. Whereas law (like morality) is normative, prescribing what ought and ought not to be done,
code is determinative, controlling what can and cannot be
done (whether this is riding the trains without paying or
copying protected work without permission). Even where
coding transparently complements legitimate legal prescriptions, non-compliance is not an option.
So, here is the thought. The strength of law is that it
engages with our practical reason and agency in an (often
ineffective) way that puts the burden of compliance (and
the responsibility for non-compliance) on us. By contrast,
with smart turnstiles and IT coding, let alone whatever
biological coding might be detected by Cambridge geneticists, regulators can achieve almost perfect compliance;
and yet, paradoxically, this is the weakness of techno-regulation. Code (qua determinative technical coding) is not
law; it never can be law; and, unless we give up on human
dignity, we should not think that code can be costlessly
substituted for law.
Roger Brownsword is Professor of Law at King’s College
London and Director of TELOS (researching the interfaces
between regulation and new technologies). The ideas underpinning this column are developed in ‘Rights, regulation and
the technological revolution’ and the debate is continued (with
contributions from TILT authors) in his co-edited collection
‘Regulating technologies’. Brownsword and TILT Professor
Han Somsen are general editors of the new scientific journal
‘Law, innovation and technology’.
24
Tilburg Research - 2008, volume 5, number 4
Tilburg Research - 2008, volume 5, number 4
25
THE researchers of TILT
Technology at the service
of law
Decent regulation of biobanks may take years
Name: Jelle van Veenen
Education: Cognitive artificial intelligence, Utrecht University
Research: Online integrative dispute resolution, LAYLA (Layman’s Legal Assistant)
Name: Simone Fennell-van Esch
Education: Dutch Law (BA), International Law (BA), Law & Technology (MA),
Research Master
Research: Identity protection in biobanks - ICT regulation as a guideline for the
regulation of biotechnology
“
If you know a problem well you can achieve a lot with
fairly simple technology. Then you don’t need technological innovations.
People think that it is very difficult to solve legal problems online because one doesn’t have eye contact nor
does one hear the other’s voice. They look to using smileys, avatars or webcams as solutions. But my research
shows that these technological innovations are not necessary. You have to approach the problem in a structured
way, making it clear where you want to go and what is
important. Ultimately that is much more effective.
In the Dutch Council for Legal Aid’s online tool
Rechtwijzer, which I helped to develop, users fill in
answers to various questions about the disputes they
are involved in. Then the system looks for the best solution to the situation in question. The solution might be:
‘get in touch with the other party’. The system focuses
on improving communication between the parties and
looking further than the standard ways of solving a legal
dispute. This may save quite some costs. For example, the
system only advises the person requesting help to contact
a lawyer if it is really necessary.
The system is not a mediator, but negotiation techniques
used by real mediators are built into it. To design this system, I studied literature about negotiation techniques but
also social science literature about human behaviour in
negotiations. This enabled me to put my finger on what
negotiators themselves often call ‘intuition’, ‘sixth sense’
or ‘experience’. The negotiation process has now been
worked out much more clearly. This does not mean that
professional mediators or courts have become redundant,
but law has become more accessible. For example, disputes about small amounts of money which would otherwise be abandoned because of the costs can be resolved
with the help of this system.
I am interested in finding out how things work. It is not
technology in itself that is exciting to me, but how it is
used. It is good to see that the systems I developed in my
research project are now being put to use in society. My
pilot project for dealing with personal injury claims was
also taken up by software companies. This system makes
it possible to hold structured consultations online, so that
you no longer have to send difficult letters and disputes
can be resolved more quickly.
”
“
Biobanks are databanks filled with human material
and information about this material. They can be used to
investigate certain abnormalities or disorders and, theoretically, to develop personalized medicine.
system). However, the regulation framework in the UK
is so complex and fragmented that it is unclear what the
consequences will be for participating citizens and what
they can expect with regard to future developments.
However, these biobanks, whether they are commercial
or public, entail significant risks for the privacy of the
individuals whose data are stored in them. For example, data may be sold to third parties or people may be
discriminated against on the basis of their biological
profiles. Tissue samples are supposed to be anonymous
because the personal details associated with them have
been sifted out. But in view of the rapid development of
various technologies, what is anonymous today may not
be anonymous tomorrow. There is also a danger that
people could be classified in a certain way, for example if
ethnic information is made available.
In Iceland, on the other hand, you simply participate
unless you clearly state that you do not wish to do so (optout system). In this country the biobank is also partly in
private hands. There has been a great deal of criticism
about the protection of privacy. At the moment this prestigious project is in fact almost at a standstill.
Biobanks are becoming reality on an ever-increasing
scale. Investigation is underway into the development of
European Union-wide biobanks, and each of the member
states is also developing its own policy. In the United
Kingdom the government is ‘selling’ the establishment
of a national biobank to the general public by announcing that by cooperating you will be helping others. The
theory is that DNA examination of the entire population
will help to reduce diseases such as cancer and cardiovascular diseases. People can choose to participate (opt-in
The biggest problem is that in many cases there is no
regulation of biobanks, or not enough considering their
complexity. New regulation frameworks are constantly
devised and it may take years before a decent regulation
is in place. In the meantime the number of biobanks is
steadily growing.
With my research I aim to outline a regulation framework that can be used to protect identities in biobanks. I
am trying to do this by examining the way IT regulation
copes with privacy protection and identity protection. I
will outline the best protection structure and the best way
to set up international collaboration. Public discussion is
also very important. Often people say that lawyers forget
social, economic and technological aspects. I would like
to dispel that prejudice.
”
26
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27
Thwarted by patents
Turning knowledge into hard cash is something Dutch
universities are doing more and more frequently, for
example with the help of patents. And why not? If a
patent is set up cleverly, the costs can easily be earned
back through expensive licences. However, there are also
considerable drawbacks to patents, both for society and
for science. According to researcher Maurice Schellekens
patents may obstruct innovation.
By Enith Vlooswijk
Child affected by HIV and TB. Photo Contrasto / Hollandse Hoogte
Have you invented something interesting? If your invention is truly
innovative and suitable for industrial
application, you can apply for a patent. It can be expensive – paying tens
of thousands of Euros for a European
patent is quite normal – but then you
have something worth having: for
years to come, anyone who wants to
make use of your invention will only
be able to do so on your – expensive –
conditions.
According to supporters of intellectual property rights, they are an
important prerequisite for innovation; after all, who wants to invest
in expensive, risky research if the
resulting product may be copied
with impunity? However, there are
also disadvantages to the principle.
For instance, in 2001 the American
company Myriad Genetics applied
for and was granted a patent for two
human genes, BRCA1 and BRCA2,
also known as ‘cancer genes’.
Abnormalities in these genes may
cause certain forms of breast cancer. Armed with this patent, Myriad
sdemanded exclusive rights to the
use of this information. Women
in the high-risk group could only
have themselves tested by Myriad.
Because of the lack of competition
the tests were very expensive and
slow. Moreover, from that point
onwards scientific research into
the genes by other researchers
was illegal. Ultimately the various
European agencies which contested Myriad’s property rights won
their lawsuit. However, this case
is a good example of the dilemma
caused by intellectual property
rights.
“The foundation of present-day patents was laid in the late nineteenth
century”, says Maurice Schellekens,
researcher in patent and copyright
law at Tilburg University and staff
member of TILT. “The industrial
revolution was in full swing and there
were many new inventions. Patents
are generally seen as a prerequisite
for innovation, but whether this
view is really correct is questionable.
Obviously companies want to be
able to earn back their investments
in innovative products. This applies
in particular to the pharmaceutical
industry. But economic investment
is not the only bottleneck in innovation.”
Myriad’s researchers did not make
their discovery starting right from
scratch; they were able to identify the
genetic information which is responsible for breast cancer thanks to the
scientific knowledge available at that
time. In other words – every scientist
builds on the experience of others.
“In order to accumulate new knowledge it is important for previously
gained knowledge to be accessible”,
says Schellekens. “At present, it is
sometimes very difficult to obtain
licences to use existing technology.
Property rights can also obstruct
innovation."
Property rights can also
obstruct innovation
Wemos, a Dutch organization which
campaigns to improve the health of
people in developing countries, is
also very critical of patent protection.
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Tilburg Research - 2008, volume 5, number 4
“The prices of patented medicines are
very high”, says Annelies den Boer
of Wemos. “This is why AIDS inhibitors were extremely expensive for
many years. However, since generic
versions from India arrived on the
market there has been a tremendous
drop in the prices. Unfortunately,
when India signed the World Trade
Organization’s TRIPS agreement in
2001 it committed itself to complying
with patents on new medicines for
twenty years. As a result, new generations of medicines will again become
very expensive.”
In conjunction with international
bodies such as the World Health
Organization, Wemos is trying to
get these problems onto policymakers’ agendas. “Companies are only
stimulated to develop medicines if
the patent rights to them will generate a lot of money. They are not
interested in medicines which are
really badly needed in developing
countries.” Wemos advocates an alternative system in which companies are
rewarded for developing medicines
for which there is a great need. “The
government could set up a special
fund for this purpose. Then companies could be rewarded for health
innovations and not only for commercially interesting medicines.”
‘Companies only develop
medicines if the patent
rights will generate a lot
of money’
There are also other alternatives to
patents to create incentives for innovation. For instance, Schellekens
refers to the popularity of the open
source software which has been
used to develop the operating system Linux ever since the 1900s.
“The principle of open source software is that the maker of a piece of
software makes the source code of
that software available to others.
They can tinker with it as much as
they like, provided they redistribute the improved version under
the same open source conditions.
In other words, they may not keep
their improvements exclusively for
themselves.” This form of property
rights works in the opposite way to
patents: anyone who claims exclusivity is breaking the rules and risking a lawsuit.
The success of Linux, the open
source operating system, is interesting. It goes against the commonly
accepted view that inventors only
invest in innovation if they can earn
money from the product through
a patent. Tinkering with Linux is
done for free. “Sometimes it is suggested that programmers work on
it for their own enjoyment”, says
Schellekens, “because they have an
aversion to Microsoft, or because
it contributes to their professional
prestige. Moreover, their own contribution is free, but later they can
benefit from all the improved versions. Open source communities
may also be of interest to hardware
producers; after all, the software
developed has to be able to run on
Tilburg Research - 2008, volume 5, number 4
their hardware. If this is coordinated via an open source system, the
hardware will also be considerably
cheaper.”
There are open source initiatives in other areas as well. The
Australian Cambia BiOS (Biological
Open Source) initiative is trying
to achieve innovations in biotechnology in a similar way; and the
Tropical Disease Initiative is developing patent-free medicines. “Often
those working on these projects
are people at universities, working for the sake of an ideal, who
can to some extent determine their
own priorities”, says Schellekens.
“Sometimes pharmaceutical companies collaborate, because it is good
for their reputation. The difference
between these projects and Linux is
that anyone who can program can
contribute to Linux. To contribute
to biotechnology you usually need a
laboratory.”
‘Developed countries
earn money from intellectual property rights,
whereas developing
countries pay for them’
Clearly these initiatives do not constitute large-scale alternatives to the patent system. According to Schellekens,
the abolition of patents is not a realistic option either. “I think that society
would benefit from a different system
of intellectual property rights, but
it would be difficult to implement.
These property rights are embedded
in international agreements and some
countries benefit from the current system. On balance, developed countries
earn money from intellectual property
rights, whereas developing countries
pay for them.”
Nevertheless, Schellekens believes
that there are in fact ways to circumvent the drawbacks of the patent system. “On the one hand you might be
able to prohibit patents on inventions
which constitute building blocks for
fundamental scientific research. But
in practice it is difficult to arrive at a
definition. For instance, knowledge
about our DNA is the result of fundamental research, but this knowledge
also has many practical applications.”
He therefore expects more from
research exemptions, which involve
legal exceptions to patent rights which
would make it possible to conduct
research based on patented knowledge
subject to certain specified conditions. “This is actually a way of going
through the back door of the system to
find a solution. The research exemption would make it possible to conduct
fundamental research, but it would
not apply to the sale of any products
resulting from this research on the
market.”
29
‘Legal exemptions provide
a solution through the
back door of the system’
In several countries research exemptions already exist. “Only the system
works differently in all the different
countries”, says Schellekens.
“I wonder what kind of research
exemptions would be needed and
what criteria could be set. I would
really like to investigate the role of
research exemptions in Europe.”
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Tilburg Research - 2008, volume 5, number 4
Column
NEWS FROM TILT
Smart gas meter? No thanks
At the request of the Consumentenbond (the Dutch
consumers’ association), TILT conducted a study in late
2008 of the privacy implications of the smart gas or electricity meter – a meter which can be read and controlled
remotely through the addition of communication technology. The research report examines whether meters like
this are compatible with Article 8 of the ECHR, the basis
of privacy regulations in Europe. As Dutch policy intentions refer to the registration of electricity consumption
per 15 minutes and gas consumption per hour, with the
data being stored in a non-anonymous form in a central
system, there are considerable privacy objections relating
to the introduction of these smart meters. After all, these
meters provide a view inside people’s front doors, because
a pattern of life can be deduced from energy consumption. Patterns of life are not only of interest to burglars,
but also to government agencies such as the police and
the social services. The Consumentenbond requested the
investigation in September because it is expected that
the Upper House will finalize the parliamentary debate on
the bills ‘Improvement of the Operation of the Power and
Gas Market’ and ‘Implementation of the Energy Efficiency
Guideline’ in November. The findings of the report can
then be taken on board in the debate.
Security identity across borders
In collaboration with the Telematica Institute, TILT has
started work on the STORK project (Security idenTity
acrOss boRders linKed). The objective is to set up a pilot
for the inter-operability of electronic identities within
the EU Member States. TILT´s activities involve research
into the legal aspects of pan-European authentication
for e-government services within the EU Member States.
Ronald Leenes is the project leader for TILT. For more
details see www.eid.stork.
Patenting nanotechnology in Europe
Nanotechnology is the technology that concerns itself with
the smallest units of matter and holds out the prospect
of manipulation of matter on the level of individual molecules. It is expected that this will result in vast improvements to many industrial products. The patenting of
nanotech inventions is well underway in Europe, but going
down to the most elemental level raises new and important questions. For example, how does patenting at the
nano level relate to similar technology on the non-nano
level? Moreover fundamental questions need to be asked:
should matter be patentable at all at the most elemental
level? In the article ‘Patenting nanotechnology in Europe:
making a good start?’, soon to be published in the Journal
of World Intellectual Property, Maurice Schellekens seeks
31
to present an initial overview of questions of law and regulation concerning the patentability of inventions in the field
of nanotechnology under the European Patent Convention.
Virtual worlds, virtual property
By Dan Burk
All across the globe, on every continent, average people
now live double - and sometimes triple or quadruple lives. Each day, millions of players log onto the Internet to
interact with one another in complex multi-player games.
The on-line gamers develop characters or ‘avatars’ that
represent them in computer adventures based on medieval fantasy, futuristic science fiction, or even re-creations
of everyday life.
In these gaming worlds, gamers acquire virtual items
such as tools, weapons, clothing, money, gems, or other
objects. Such virtual objects have great value within the
game. Magical swords, armor, or supplies are useful and
necessary to successful play, and they are relatively scarce
in an economic sense. Like items crafted in the physical
world, virtual objects are the product of time and labor.
Consequently, gaming worlds have their own virtual economies; typically the software that governs such games
allows the items to be traded, bought, and sold within the
game for an in-game currency.
Economists studying on-line gaming have found that
some games have virtual economies larger than those of
some actual nations. But the value of virtual property is
not confined to the virtual world; it has real world value
as well. The holder of virtual property can often exchange
it for real world currency. The holder offers the item on
a trading forum such as e-Bay. After a purchaser makes
a real world payment in hard currency, the avatars of the
parties meet in the game for delivery of the virtual item
to the buyer. Indeed, there are now real-world businesses
devoted to the generation and sale of on-line items.
In some cases, gamers may even sell their avatars or
accounts to gamers who don’t want to start a new character from scratch.
This raises a host of regulatory issues. Should the purchase of virtual items be taxed? Is enrolling in an on-line
game a type of business opportunity subject to securities oversight? Perhaps most importantly, to what extent
should game developers be able to control exchanges outside their games? In some cases, the business model of
the game developer is based on fees from virtual exchanges in the game economy. Unauthorized sales of virtual
objects on the real world ‘black market’ cuts the developer
out of the transaction, so game developers have argued
that they hold the copyright to items and characters generated in their games. But gamers have argued that it is their
creativity and labor that creates the valued items, so that
they have an interest in their disposition. Resolving this
intellectual property dispute may determine the winners
and losers in both real and virtual economies.
Dan L. Burk teaches at the University of California, Irvine,
where he is Chancellor’s Professor of Law and a founding
member of the law faculty. His research focuses on the law of
intellectual property, especially ‘cyberlaw’ and the regulation
of global electronic networks.
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Tilburg Research - 2008, volume 5, number 4
33
Privacy: refuge of evil or
oxygen for survival?
Do you know what details are stored about where you are when you make
a phone call or send a text message? And about what products you buy at
the supermarket and where you go if you have a public transport chip card?
And do you know how long these details are kept and which institutions are
allowed to pass them on to the police? Technology makes it easier to track
down criminals and terrorists, but at the same time it means a considerable
loss of privacy for all citizens. Bert-Jaap Koops, professor of technology regulation at Tilburg University and staff member of TILT, outlines a worrying
picture of the future – the ‘transparent citizen’.
Virtual reality simulator. Photo
VirtuSphere / Rex Features Ltd.
By Tineke Bennema
“Technology enables us to find out a
great deal. While technology can also
be used to keep things secret, there
are far more ways to expose details
than to conceal them. These technological developments are being used
to an increasing extent to investigate
criminal offences. Because the police
are able to gather more evidence than
before, the legislature has increased
police powers and also the number
of punishable offences. As a result
technology facilitates a knock-on
effect of criminal law which makes
citizens completely transparent: the
government can find out everything
about them.”
This tendency to gather and store
more and more private details mushroomed after 11 September and the
ensuing feeling of insecurity in the
community. In addition, we had to
arm ourselves against an enemy
which was attacking our society
with the most modern technology.
The picture presented to us was that
privacy was the refuge of evil and
this was why the government took
measures which would have been
unthinkable twenty years ago.
‘Technology facilitates
a knock-on effect of criminal law which makes
citizens completely
transparent’
Koops has specialized in research into
the interaction between technology
(IT, biotechnology and nanotechnology) and law, particularly criminal
law and regulation issues. As examples he mentions the introduction of
the general duty to provide proof of
identity, border-control identification
by iris scans and fingerprints, the
requirement for providers to store
Internet and email data for a year, and
the passing on of passenger information to American airlines. He thinks
that measures like these go much
too far and also that their effectiveness is questionable. It has not been
demonstrated that the introduction
of all these measures helps to catch
terrorists. However, the measures do
affect ordinary citizens, whose personal details in all sorts of areas are
recorded by way of precaution.
“If you have evil intentions, a duty
to identify will not help. The 11
September hijackers simply entered
the United States with passports. But
now every citizen is seen as a potential risk, and this makes things difficult, especially if you have the ‘wrong’
profile; for instance, the police ask
dark men to identify themselves in
the street more often than white men.
In this way the government is creating a basic mentality of insecurity,
which is polarizing our society. To an
increasing extent people are thinking
in terms of ‘us and them’, with the
connotation that ‘they’ are not to be
trusted, whether they are loitering
youth, Muslims or immigrants. I like
to take myself as an example: I have
a beard and I am a vegetarian. These
details on a aeroplane passenger list
already mean that I could be classified
as ‘suspicious’.”
‘To an increasing extent
people are thinking in
terms of ‘us and them’
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Tilburg Research - 2008, volume 5, number 4
It is not only the government that
contributes to this trend, but also the
media and politics. Parliamentarians
respond more and more to hypes in
society expressed by the media. As a
result of one or two tragic cases which
were given wide media coverage –
such as the death of the Dutch child
Savanna – the government proposed
the nationwide introduction of electronic child records. “This is trying to
reduce risks by cracking a nut with a
sledgehammer”, says Koops.
The question is whether we really
want to gather and use more and
more private information in this way.
According to Koops society does not
realize that within ten or twenty years
we will have become completely transparent citizens; that even if you have
nothing to hide and no evil intentions,
everything you do and think will be
followed. “Then we will evolve into a
society in which everything is considered in terms of criminal law, risks
and monitoring, a society without privacy, in which there is no longer any
place at all where you can be yourself
without inhibitions, possibly not even
in your own mind.”
‘There will be no place
where you can be
yourself, possibly not
even in your own mind’
Koops argues that therefore in the
first place there should be universal
awareness of the dilemma: do we
want to become transparent citizens
or do we want to create more safeguards to protect citizens’ privacy? To
date there has been very little discussion about this, neither in Parliament
nor in the media and in society as
a whole. However, it is striking that
over the past year or two the media
have become more critical about the
ongoing erosion of privacy and that
some words of caution have also been
expressed in Parliament. In Koops’s
opinion the government and citizens
should become aware of the cumulative effect of all the measures which
expose parts of people’s personal
lives. As things stand, the government continually presents separate
measures, which obscures the fact
that all of these measures together
may have far-reaching consequences.
Koops would also like to see more
safeguards and monitoring of the
acquisition and storage of private
details: “We can use the same technology that helps the government to
collect data to protect citizens. For
example, when applying road pricing
you can opt not to register exactly
which road someone is driving on
but only whether it’s a busy road or
a quiet one. You can set systems to
delete details after a certain period.
In short, a lot more safeguards
should be built in. It’s also possible
to create more counterbalances; for
example, agencies such as the Dutch
Data Protection Authority and the
Equal Treatment Commission should
be given more resources and pow-
Tilburg Research - 2008, volume 5, number 4
ers to monitor procedures. Finally, a
more structural form of supervision
of criminal law should be put in
place; standard practice in criminal
law has been that a court checks
that the whole procedure is followed
properly, but most cases are not even
brought before the court. It would
be more appropriate if an institution
similar to the Netherlands Court of
Audit were regularly to check that the
police are doing their job properly.
If abuses have been raised, it could
make a report. It is only in this way
that it is possible to avoid mistakes
like what happened recently when
camera shots were shown on TV
of people who were suspected of
debit card fraud – only they were the
wrong pictures. These people have
been put in a bad light in their own
environment, and apologies made
later don’t help to put that right.”
We can use the same
technology that helps
the government to collect
data to protect citizens
Koops says that unless there is discussion and protection, within ten to
twenty years we will be able to know
everything about what citizens are
doing and possibly even what they
are thinking, even when they are in
their own homes. Koops:
“Companies are now developing
mirrors for your bathroom which
register your heartbeat and give you
advice on your health. Supermarkets
and department stores have already
recorded your purchases and in the
future will be able to remind you that
the underpants you bought a year ago
are due for replacement. Heat sen-
sors can register through the walls
how many visitors you have. Satellites
and aerial photographs collect more
information about you. If no protection is introduced, this information
can be passed on to the police. The
completely transparent citizen: do
we want a society like this, without
any privacy? Privacy is not a refuge
35
of evil, but in my opinion an essential
requirement for citizens to be able
to live freely in the community. As
another metaphor puts it - privacy
is like oxygen, you only appreciate it
when it is gone.”
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37
THE researchers of TILT
For the virtual world selfregulation is most effective
Exploring links between
science, law and democracy
Name: Rachel Marbus
Education: Academy of Journalism (Tilburg) specializing in written journalism,
Dutch law (Tilburg University) specializing in law and technology
Research: Reconceptualizing identity, identification and identity management in
an online society; EU PRIME / PRIME Life
Name: Naveen Thayyil
Education: Law at National Law School of India, Bangalore (BA., LLB (Hon.s));
University of London (LLM)
Research: Genetic Modified Organisms regulation in the European Community
“
Have you ever typed your name in on wieowie.nl? You’ll
be amazed how much information is to be found on the web
about you. Practically everyone has several identities in the
online world – a profile on Hyves or LinkedIn or an avatar
in Second Life. Just by pressing a button all those different
partial identities can be linked to each other.
The virtual world is not anonymous and often your offline
identity is linked to your online identity. Moreover, many
people unthinkingly click to accept the terms and conditions
of all those online worlds, thus relinquishing many rights
to their personal details. The commercial world is quick to
respond to this: for example, this is why men are not sent
ads for sanitary towels on their Hyves.
Targeted marketing doesn’t seem all that bad – people often
find it quite convenient. What is more annoying is that once
details have appeared on the Internet it’s almost impossible
to remove them. The information can be traced for years
through search engines such as Google. Internet has a persistent memory.
My research focuses on the protection of personal identity
within online communities such as Hyves, games and
Second Life. As a user, how should you handle all your different identities? How can you manage your many selves?
Often this turns out to be very tricky. The different identities threaten to mingle and keeping the different audiences
that go with your different partial identities separate is
under pressure. As well as conducting a thorough literature
review, I also participate in various online communities and
games. This enables me to gain a good understanding of
how sites, virtual communities and people treat identities.
In my opinion there are three ways to improve the protection of identity and details relating to individuals. Firstly
there is technology. Many online communities are implementing increasingly far-reaching technological improvements, so that it is becoming easier for users to manage
their identities and to prevent third parties running off with
their personal information. Providers of games and social
network sites are motivated to do this because they see that
otherwise they will lose customers. Privacy is becoming an
important business. Secondly, there is also a kind of social
regulation. People draw each other’s attention to the fact that
they should take care with their details and identities, and
with each other. In addition, ‘intolerable’ conduct within
communities is often punished by social sanctions such as
exclusion. The final tier is the legal framework which can
help to protect privacy and personal data.
Although my research is still ongoing, I think that legislation is the last resort in regulating the virtual world. It is
simpler and more effective to preserve users from abuse of
their identities by means of self-regulation and clear information.
”
“
Commercialisation of genetically manipulated crops
continues to be controversial, throwing open important
issues about use of new technologies. Those in favour
reason, for example, that it enables the reduction of
pesticide use, raises the nutritional value of crops and
increases yield. But opponents think that it can possibly
cause irreversible damage to our environment and the
health of people and animals can suffer.
At the national level, decisions to approve or not to
approve genetic manipulation are often based on
unclear underlying agendas. The legal system must
appropriately regulate genetic modification, but on what
basis should these decisions be made? What democratic
procedure should determine the permissible extents of
‘tinkering’?
I am trying to find an answer to these questions in my
research. It seems that we have different levels of confidence in the nature and involvement of scientists in the
task of this regulation. It is often argued that science
may not be an objective indicator to ascertain hazards to
health and environment. Some scientific opinions are
at odds with each other, and scientists may even have
close ties with commercial organizations or other interests. Should larger public interests and apparent social
value of new technologies play a role in their regulation?
There might be important ethical or moral objections
from some groups which science may not be capable to
address. How, then, should the legislator decide?
I don’t want to make a judgment about genetic manipulation, but I do want to carefully examine how democratic decision-making procedures should be structured to
arrive at appropriate regulation. The reality of national
regulation co-existing with European Community Law,
International Environmental Law and the World Trade
Organisational framework makes this a challenging
exercise.
”