Utopia revisited: A dialogue on biodata
Giovanni De Grandis, Programme for Applied Ethics, Department of Philosophy and
Religious Studies, Norwegian University of Science and Technology, Trondheim.
Abstract
Biological data have become a strategic resource for the development and marketing
of innovative biomedical technologies. Building on discussions and controversies
about the ownership and commercial exploitation of human tissues, regulations and
frameworks for the collection and use of biodata are currently widely discussed.
Very important goals are at stake—protection of individual rights, satisfaction of
patients’ needs, technological innovation, economic growth—and reconciling them is
a formidable challenge. A key tension emerges from the rift between the altruistic
and disinterested motivation expected from citizens contributing their data and
samples, and the central role of for-profit companies in the development and
commercialisation of medical innovations stemming from such data. Turning gifts
into proprietary assets raises questions of fairness, trust and exploitation. The private
appropriation of data is discussed through a philosophical dialogue modelled after
Thomas More’s Utopia. A fictional character presents the central idea: to empower
people to enter the data market with adequate bargaining power and thus achieving
a much fairer distribution of benefits and burdens, biological data should be owned
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collectively by regional citizen corporations. Some of the pros and cons of this
proposal are then discussed by the various characters participating in the dialogue.
Keywords
Biological data; data ownership; data appropriation; benefit sharing; distributive
justice, Citizens corporations.
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Utopia revisited: A dialogue on biodata
Giovanni De Grandis, NTNU
It is excessively difficult to get any change made,
and yet everything needs to be changed.
Allen 1957
Discoveries made with your DNA samples
may be patented by us and the University.
These patents may be sold or licensed,
which could give a company the sole right to make and sell products
or offer testing based on the discovery.
Royalties may be paid to us, the University, and the Sponsor.
It is not our intent to share any of these possible royalties with you.
Typical Consent Form for DNA banking
Merz et al 2002
The truth is that those who participate as subjects
and who provide vital genetic research material
are the key components of the genetic research machine
and are crucial to its continued success.
Whether they are represented by individuals or by communities,
they are currently undervalued, under-respected and undermined
Laurie 2002
It is not obvious ... why a right to refuse to participate in genetic research,
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when it could be to the benefit of others, should be overriding
Chadwick & Berg 2002
“There is an economy around this data,’’ said Sharon Terry, …
“Why shouldn’t the consumer be part of it?”
Daley & Cranley 2016
Prologue (Caveat lector)
The following dialogue was written in 2016. It is an attempt to encourage debate on
biological data: on who should control them, own them and benefit from their use. The recent
500th anniversary of the publication of Thomas More’s Utopia (published in 1516) inspired
the idea of revisiting it, but there are more substantial reasons for looking back at More’s
famous book.
First of all, Utopia managed to win a large readership and stir debate. Furthermore, the book
was largely inspired by the social transformations following from the appropriation of
common land through the well-known development of the ‘enclosures’. The appropriation by
a small class of wealthy landowners of what was previously common property had
momentous economic and social consequences. It made possible the accumulation of capital
later instrumental to start the industrial revolution. More could not have foreseen that
development, yet he was well aware of, and concerned about, the afflictions suffered by the
dispossessed peasantry. Like More, we may be witnessing a momentous socio-economic
change, while not yet being fully aware of the consequences of the regime of ownership of
biological data (and tissues) that is currently emerging. Like More, we may be well aware
that something is wrong and needs to change and yet not be able to propose a solution in
which we have full confidence, but only some provocative suggestions aimed at shaking our
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deeply held assumptions. This is why Utopia is an inspirational example for the task at hand.
Furthermore, a dialogue affords more freedom, can be open ended and engage a broader
audience than a typical scholarly article. Since broader citizens’ engagement is often touted
as a precondition for making science and technologies more responsive and accountable,
trying to reach a broader public seems something worth trying.
Nevertheless, a dialogue might still seem an unfamiliar and baffling choice, a literary form
that does not lead to clear conclusions and escapes familiar methodological requirements.
However, the purpose is clearly neither to report empirical findings, nor to argue for
normative conclusions or recommendations. This dialogue attempts to do something quite
different: it is an exercise in ‘institutional imagination’—it tries to help readers to imagine
how the ethical and socio-economic context would change if certain institutions were realised
and hence enable readers to occupy a different standpoint from which to look at the current
situation and to compare it to a hypothetical alternative. It is this combined effect that is
aimed at: destabilising our assumptions and enriching the perception of possibilities through
broadening our institutional imagination. Ultimately, the goal is to expand our moral and
sociological imagery.
Like in More’s dialogue, the one character taking centre stage is wholly fictional and the
network and activities she describes at the end of the dialogue are as completely fictional as
the island of Utopia.
A philosophical dialogue
Last September I was in Leuven for a workshop on genetic data. After a long day of work
and the event dinner, I was walking back towards my B&B still discussing with my
colleagues Darya and Michel. We were still arguing in an elated mood when we walked past
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the Town Hall and we all stopped to admire once again that most impressive building. We
stood silent for nearly two minutes awed and almost raptured by the exuberance of this
building. Michel eventually broke the silence and remarked how much daring and faith it
must have taken to build such an exquisite building in times when wealth and technology
were not remotely comparable to those we have today. I added that nowadays our most iconic
buildings lack a comparable symbolic richness and meaningful details. Darya looked at us
with a slightly mischievous smile and suggested that rather than indulging into commonplace
remarks about modern architecture we could ask ourselves if we ourselves had enough daring
and faith in addressing the challenges posed by new biotechnologies. Michel and I granted
that it was a good point, although I felt that it is equally important to be quite realistic in our
reflections and not to let ourselves forget about the complexities and constraints with which
any proposal need to reckon. Darya was looking at me with an inquiring and slightly ironic
expression. I thought she understood my bafflement and I decided to air my thoughts.
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Leuven City Hall, from Wikimedia Commons
—I totally see your point Darya, we often get caught discussing minutiae and niceties of little
more than academic interest. This is something that we need to strive to change. But what
does it mean to be daring? You can be daring by moving away from academic debates and
get involved in policy discussions. That is daring in a way, but it also means accepting as
given so many things that we don’t like and that are not simply ‘natural’ and immutable. Or
you can be daring in an intellectual way and look at things questioning all the assumptions
that are taken for granted and provide people with a fresh perspective, from which the
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questions that currently occupy them seem trivial, while new and more relevant challenges
suddenly call for our attention.
Michel nodded and agreed with my observation. Indeed, he pushed it further.
—We are almost, to recycle Augustine’s metaphor, citizens of two cities. If we try to be
practical and engaged we get stuck in the mud, and we cannot but muddle through. If we are
philosophical we can question things, but it is so hard to have any traction. Even if you
manage to get some attention, and we know it is not easy, people often say: ‘cool, you are a
clever guy, that is a refreshing take on the issue’, but the next day they go back to business as
usual.
—Precisely!—I added—If you get close to the action, there is little margin for change. If you
free yourself from constraints, you easily become irrelevant. But perhaps we are painting
things too dark. I believe it is possible to be close to the action and try to understand which
interests and values are being neglected and try to find a lever to open some space for them.
Michel and Darya smiled at themselves and then at me.
—We know that this is what you are trying to do Johannes, said Darya, and we respect your
attempt.
—Aren’t we all striving to be practically relevant, to have an impact?— I asked.
—If by all you refer to us three, I think you are right —Michel replied— but I see that not all
of our colleagues share this concern.
—I believe we need to be more involved in action —added Darya. —I respect Michel’s
commitment to produce well-crafted and compelling philosophical arguments in the hope to
improve public discourse. I equally appreciate Johannes’s attempt to understand which really
important questions are emerging from practices and actual experiences and not to care too
much about disciplinary boundaries and conventions. As you know I have also strived to be
relevant by working as an embedded social scientist in scientific projects, although my
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achievements have varied widely. But now I wonder if all these attempts, ingenious and
brave as they may be, are really up to the challenge. Things are moving so fast, and we…
—We are lagging behind! — Exclaimed Michel.
We stood silent for a few seconds. I stared back again at the Town Hall shining in the night,
brimming with artistic confidence and assertiveness. Excessive perhaps, and yet so
compelling and unapologetic in its flamboyance. While staring at it I suddenly felt an
emotion similar to what I experienced in Torino, when at night I contemplated the Mole
Antonelliana for long minutes with a feeling of endless amazement and pleasure. Like
Leuven’s Town Hall, the Mole is a building that overstepped the boundaries, and managed to
dominate the skyline of its city and to project in it the dream of a visionary. A vision that had
become the signature building of a city known for its pragmatic and understated character!
Then it suddenly came to my mind that 500 years ago not far from Leuven another vision
took shape: a literary one that reacted to the momentous economic transformations of its age
and that, out of the spirit of satire, christened a whole genre: Thomas More’s Utopia.
I was so lost in these thoughts that I missed what my friends were saying. When I eventually
caught up with their conversation, it was kind of uncanny what Darya was saying.
—...and again, we are not keeping pace with social transformations: appropriations are taking
place under our eyes, with our consent, spoiling us of our best assets and we are not making
any serious effort to stop it. At the time of enclosures landlords were depriving people of
land, the main asset at that time, now servers, providers and industries are appropriating data,
the main asset of the information age. If we want to fight back, what could be a better place
to start than reclaiming our biological data?
She paused, she looked around and, after noticing something, she checked the time and said
with a sense of hurry:
—It’s almost 10pm; quick follow me!
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Torino, the Mole Antonelliana (with the Alps in the background), from Wikimedia Commons
They started walking towards a shop window in which the light had just gone off. They
turned back towards me while starting to run and prompted me to hurry. When I caught up
Darya was greeting a tiny man that handed her the keys, swiftly turned towards us, smiled
friendly and hurried away. We walked inside the shop, which was now half lit again and
turned out to be a mini Korean style Internet Cafe. Darya was already setting up a corner
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table for the three of us and launching Skype. She looked at us with a quite excited smile and
invited us to sit.
—San Sen Die is online and I really hope she has time to talk to us. She is such a dedicated,
imaginative and inspiring person. I really can’t wait to see if you’ll be as impressed by her, as
I have been.
Clearly, I was still trying to understand what happened in the bit of conversation that I missed
while lost in my aesthetic reveries. I looked at Michel with a baffled and inquiring
expression. He smiled and said:
—Mon ami, you’ve really lost us, didn’t you? —And laughed with amusement and
bonhomie. Darya was busy chatting on Skype with her friend with the exotic name that I did
not grasp. Michel then brought me up to speed with what was happening.
—Darya believes that it is time to use our knowledge and awareness of important issues to
start acting. Young people in biotech or IT are doing things, making things happen. We, the
intellectuals, are not. You know the story, we are like the howl of Minerva.
—That’s true, except that I’m not young anymore!
—And she feels that we need to be much more hands-on, and that rather than being
exclusively focused with persuading our peers, we need to persuade the people needed to
make things move on. And then she told me that she had come across a person that made her
believe that this should be our mission and that it is possible to do so. She said that she met
her first at a summer school and then again at an event organised by the WHO. It was in this
last occasion that she told her of a visionary idea that clearly has really struck Darya. She
described it as a remarkable vision, a 21st century version of Utopia: so compelling as to
seem within reach, and yet…
—Here we go, San Sen Die will be with us in a minute, she just needs to post a letter and
make herself a cup of tea and then she can spend three quarters of an hour with us. It is not a
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lot of time, so I’m asking you to let her talk as much as possible, because if we start
questioning her you won’t get a picture of her idea, and I want you to have the whole picture,
because I really want to know what you think about it.
—It’s fine with me, you know I like to listen when I find a good speaker with original ideas, I
said.
—I’m perhaps not as good a listener as Johannes, said Michel with an amused and ironic
smile, but I’ll bite my tongue!
We all had a good laugh and then we saw San Sen Die walking towards the screen with a
look full of curiosity and a gentle smile.
—Good evening from tomorrow! I’m sorry I can’t be with you for much more than half an
hour: I have a meeting scheduled at 6:45.
—Goodness gracious a meeting at 6:45 in the morning, exclaimed Michel, I can hardly meet
a croissant at such an early time!
—Shut up, you lazy man! Said Darya, trying to sound amusing, but betraying her concern
that we may not manage to get the whole story.
—You’d be much less impressed if you met me at your time, what is it 11pm there?
—10, we said in unison.
—Ok, maybe I could still keep my eyes open then. But let us not waste time. I just need to
ask you one thing. You need to promise me that you will keep everything I say strictly
confidential for at least 3 months. No leaks whatsoever. Not until next year. Can you honestly
promise that?
—Sure, I promise—said Michel.
—I promise.
—Great—She paused a few second. She looked at us through the screen of her computer with
a very intense, but gentle look. Then her expression relaxed as if she decided she trusted us.
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She took a sip of tea, slightly bowed as if to excuse herself, she gently smiled and started
talking. She spoke in English very fluently, her voice was mellow and self-assured, and her
delivery compelling: mostly calm and reflective, occasionally more passionate, but always
measured, never excessive or contrived. Perhaps the Belgian beer may have played a role too,
but it was such an enjoyable experience to surrender to her words that none of us interrupted
her.
This is what she told us.
—Let me state the problem first, and then I will illustrate my proposal. The emergence of IT
and biotechnologies, especially genomics and molecular biology, has generated a lot of
interest for the biological and biomedical data of human beings: they are the raw material out
of which new and valuable knowledge can be extracted. Such knowledge may be valuable in
several respects. From a scientific point of view, it may lead to a better understanding of
biological phenomena. From a medical perspective it may lead to improved diagnosis,
prevention, therapies and to much better understanding of the links between health and
behavioural and environmental factors. From an economic point of view, it may lead firms to
develop profitable products, while from a national point of view, nations can consolidate their
presence in a strategic, knowledge-intensive economic sector that can create high quality and
well-paid jobs. In fact, given the very large investment that are needed to develop these new
areas of knowledge, a purely disinterested motive cannot justify the investment and attract the
public and private money needed. So, while many scientists are motivated by the desire to
know and understand, the overall enterprise is not driven by this motive, but by the expected
benefits in terms of medical improvements, private profit and national interest. Of these three
goals, the one that takes central stage is ultimately private profit. There are two reasons for
this prominence of profit.
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—The first reason is that the final development of medical improvements is left to the private
sector, which is driven by the profit motive, which in turn will determine what will reach the
market and at what price. The second reason is that the establishment of a cutting-edge
pharmaceutical and biotech industry depends not only on a country’s ability to provide an
attractive and supportive environment for these sectors, but ultimately on these latter’s ability
to be profitable or to keep generating expectations for future profit. So pharmaceutical,
diagnostic and self-tracking devices industries want to access and use biological and
biomedical data in order to develop and market profitable products. Furthermore, they are
supported by very substantial public investments by governments attempting to improve
health, and hopefully contain costs, and to support a paragon of the knowledge economy. My
key point is that while those involved in developing biomedical technologies are moved by a
variety of motivations, overall the process will only take place if the prospect of profit attracts
capitals. If this happens, public investment will be forthcoming and momentum will be
established. Yet, at the same time, the profit motive will be ingrained in this scientific
enterprise as a necessary condition for its perpetuation.
—Now that I have established the fundamental drivers of biotech innovation, let’s have a
look at how people have been involved and enrolled in the process. People have been
encouraged to contribute their data as a way of contributing to the growth of scientific
knowledge and to the development of new therapies and cures. Appeals are made to people’s
generosity and willingness to contribute to scientific and social progress, as well as to
compassion for those unfortunate suffering from grievous diseases. At least this is the
rhetoric used when information is asked by research institutions that are publicly funded and
controlled. When the information is instead collected by private firms, typically the personal
data are collected in exchange to access to some personal service, for instance sharing into a
health social network; having one’s genome sequenced and ‘interpreted’; participating in a
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clinical trial. So here the rhetoric is not one of disinterested generosity, but of reciprocity: it is
a do ut des, people are asked to give in order to get something in return.
— In response to this emerging data-rush, there has been a lot of discussion about the risks of
privacy infringements and of discrimination that may follow from giving away biomedical
and especially genetic information. While these are important and genuine issues, it is
striking that there has not been more discussion and concern about the economic implication
of donating or exchanging biomedical data and the fairness of these implications. And it is
even more remarkable that criticisms of the current situation have had very little impact on
legislation, legal decisions and regulatory frameworks. I believe that this is the most
important issue and that only by addressing the economic aspect first, a satisfactory handling
of the privacy and discrimination problems will be possible.
—The logic of my approach is very simple. I believe that economic considerations and
interests are nowadays the most important drivers of technoscience. Markets, competitiveness
and profit are the most powerful forces shaping the direction of research, the transfer of
knowledge and the diffusion of technoscientific innovation in society. If we are concerned
about the interests of individuals and of peoples in the face of possible misuses of their
biodata by third parties pursuing their own partial interests, we need to find a way to
empower individuals and people. So far, this goal has been pursued by requiring that people
give informed consent and retain the right of withdrawing from research. A strategy that, as
many abuses have shown, has proved inadequate, and yet can set serious obstacles to
research. On the other hand, the idea that their biodata may be an economic asset that people
may want to take advantage of or capitalize, though not necessarily in monetary terms, has
long been resisted because it was feared that this would undermine people’s generosity and
willingness to disinterestedly support science. Then the idea of benefit-sharing emerged, but
has seldom been implemented, the lack of individual ownership of tissues and biodata has
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been contested, but things have not changed, and now the idea of benefiting from one’s own
data is beginning to be advocated. Yet this emphasis on individual consent, individual
ownership and individual benefit has not empowered patients and citizens. On the contrary, it
has left us with an unarmed individualism, incapable of securing to people the benefits they
can legitimately gain from their biodata. A single individual, by herself, is actually unable to
even benefit from them without guidance, let alone to extract her biological data. Inaccessible
and scarcely useful, incessantly released into the environment by our bodies, one’s own
biological data are an asset bound to be alienated all too easily or sold much too cheaply.
Furthermore, individual ownership may prove a serious obstacle to data-sharing and for types
of research that require large and unbiased data set. Scientist may end up with incomplete and
patchy data sets of limited value.
—I propose an alternative approach, which takes seriously economic interests, both in the
sense of considering the force of private interests and in the sense of acknowledging people’s
aspiration to get the most out of their biodata. Besides taking economic interests seriously,
my proposal attempts to empower people within and through the market system. But there is
a price to pay in order to achieve this: the idea of individual ownership of biodata needs to be
abandoned in favour of a collective ownership. So, in the end the solidaristic element is
rescued, while the benefits of the market are shared more justly and the goals of biomedical
research more influenced by the interests of communities. I am sure that this sounds strange
and mysterious, but bear with me and I will explain you how this can be achieved.
—Let me introduce the idea by briefly repeating some of my basic assumptions. Each human
being is a ‘carrier’ of biodata, and unless individuals are carriers of very rare and unusual
biological features, like Henrietta Lacks, John Moore and Ted Slavin, the data of an
individual have a marginal value close to nil. It is when biodata are aggregated, linked and
crunched that they become valuable. Markets are extremely powerful tools that enable
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participants to achieve many goals very efficiently. They have a problem though: actors enter
markets with great asymmetries of power, be it information, wealth, capabilities or
bargaining power. In the health data market researchers have knowledge and know-how,
companies have capital, knowledge and know-how, states have regulatory powers and
capital, supranational governing bodies have moral authority and regulatory power. Citizens
are the sources of data, but cannot extract and interpret them on their own. Furthermore, until
they pool together their data and form strong oligopolies, their data are bound to be given
away for free or next to nothing, when not simply appropriated by third parties. In short, if
people are entering the market as isolated individuals they have no bargaining power at all,
they are the weakest player, often too weak even to win legal battles against resourceful
corporations and public institutions.
—But now imagine the following scenario. Suppose that we divide the world following
existing administrative regions, like Flemish Brabant where you currently are. Each
administrative region forms a corporation, which we will call Regional Citizens Data
Corporation: ReCiDa for brevity. Each ReCiDa owns the biological, medical and health data
of all the residents. The corporation has data sovereignty, which has to be indivisible and
inalienable, as Hobbes and Rousseau have taught us. This means that data cannot be
withdrawn, for citizens do not own them, nor can be sold or transferred to anyone else. The
corporation has the task of collecting, curating and managing all the biodata. Every region
will thus have a complete and unbiased data set. Whoever wants can commission a query on
the data, which will be performed either by the ReCiDa corporation or commissioned to a
third party. No restrictions will be posed to queries from basic scientific research whose
results will be shared in the public domain, thus securing that non-commercial science have
access to complete data sets. However, the results will be first patented or protected by
copyright and then their use will be given in non-exclusive concession to the inquiring
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company in exchange for a cost-covering fee and royalties on every commercial product
whose patent refers to those data. The company buying the information can patent the results
of their further R&D, but the ReCiDa corp will have a royalty percentage on any commercial
use, since this latter is based on information that has been patented or copyrighted. In this
way basic science will not be charged beyond the covering costs, but any commercial use will
generate royalties. Data access will be facilitated, but benefits will be redistributed.
—The reason for giving ownership of biodata to a regional corporation is that it is the
smallest unit that can have enough resources and data to extract value from them while not
being too remote from citizens. So, ownership is entrusted to this citizens’ corporation on the
basis of two combined criteria: capability and accountability. Capability requires that
ownership and responsibility fall on a subject that has the competence, resources and power
to extract, interpret and manage the biodata. This is not an unusual requirement, for instance
legal status and responsibility are given to individuals who can control themselves and not to
children or the insane; sovereignty is attributed to political bodies capable of controlling their
population and territory; natural resources are usually owned by nations or regions rather than
by individuals. The second principle, that of accountability, requires instead that ownership
and responsibility fall on a legal body that is as close as possible to citizens and under their
control. Since individuals are very vulnerable to the misuse of their biodata, it is very
important that they have some effective control over the organisation that manages them and
that they can trust it. Combining these two requirements, as well as considerations of
practical feasibility, leads to the choice of entrusting ownership to the ReCiDa corporation.
—But ReCiDa corporations have not only ownership: they have stewardship. Indeed, their
very raison d’être is to care for data and make people benefit from them. This stewardship
role brings with it clear obligations. ReCiDa have an obligation to adopt state of the art
technique of encryption and anonymisation of data, to keep all data and biological samples
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within its custody and to keep them safe. Furthermore, ReCiDa corporations have the mission
of enabling uses of the data for scientific research and biomedical innovation that can benefit
humanity. In these cases though, the corporation retains ownership of data and royalties over
any commercial derivative of these data and samples, so that people always benefit from
commercial products and services for whose development they have contributed their data.
Finally, the corporation has an obligation to be insured so that it can compensate any
individual who would be damaged or harmed by any failure by the corporation to protect
their data. The corporation should also provide legal assistance to any of its member whose
biodata or biosample or bodily integrity has been damaged.
—Since a ReCiDa corporation is a legal entity created to best serve the interest of the people
in making the most of their biodata, this goal and mission are to be implanted at the core of
its legal constitution. The motto of ReCiDa corporations is biodata from the people, for the
people and through the people. The people are the source of biodata, and thus are responsible
for the completeness and statistical value of the data; people are the beneficiaries of biodata,
and thus they should have access to innovations stemming from the data and share in the
profits coming from innovations; people are the managers, through their corporations, of the
data. It is a virtuous circle, or reciprocity in stewardship: the corporation ought to take care of
the interest of the people while the people ought to do their part in supplying data sets as
complete and accurate as possible.
—In order to secure this goal ReCiDa corporations will have a very strict statute that poses
their primary and fundamental goal: namely the attempt to preserve and improve the health of
the members of the community, that is all the residents in the region. This objective will be
pursued through promoting a number of different goals: the generation of the most complete
and unbiased biomedical data sets, the improvement of the environmental and social
determinants of health, beginning from the least advantaged groups, the provision of equal
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access to a level of healthcare services that is financially sustainable by the community, the
preservation of a healthy environment for current and future generations, the protection of the
bodily integrity of each member of the community and of their rights to make autonomous
decisions about their bodies and health, provided that their choices do not constitute a health
hazard for other people.
—The corporation is allowed to make profit out of knowledge derived from the data it owns,
but these financial profits have to be used exclusively for the following 3 goals: First,
covering the costs of efficiently running the company in full abidance with current laws;
second, curating the data and carrying research on them aimed at pursuing the corporation’s
statutory goals; third investing it in activities and services aimed at advancing the health of
the regional community and at monitoring their effectiveness.
—Each corporation is run by a board of trustees, which is controlled by a board of
representatives. This latter is composed by 40-50 citizens drawn by lot, receiving basic
training and serving for 3 years. The board of trustees instead is formed by 12 experts and
should include at least one from each of the following areas of expertise: biology, genetics,
clinical medicine, nursing, public health, bioethics, law, social sciences, economics and IT.
The board of trustees is legally bound to further the corporation mission and should not have
conflicts of interest. Its decisions need to be ratified by the board of representatives, which
has the faculty of rejecting their decisions or to ask for improvements and changes in the
interest of the health of the community. The board of representatives is required to consult the
regional government or the political authorities responsible for setting the health policy of the
region and funding it. However, the board is independent.
—Given the high initial investment to set up the corporation and to collect data and/or
reorganise existing data, corporations are encouraged to form consortia. Regions that already
have excellent data sets and facilities, like biobanks, can act as catalysts of consortia that can
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share expertise, facilities and make economies of scale. ReCiDa corporations in affluent
countries will be required to partner with corporations from mid-income and low-income
countries. Accordingly, consortia will need to meet the following requirements: include
corporations from the high-, medium- and low-income nations; hence the minimum number
of corporations will be 3. And members from one of the income group can never outnumber
members from the other two together. There is not a maximum number of corporations, but
no consortium at the moment of its constitution should represent more than 1% of the world
population or more than 2% of the world GDP. The reason for having such criteria is that
consortia are meant to facilitate the exchange of expertise, best practices, data comparisons
and to prevent the generation of further inequalities between nations at different levels of
economic development. On the other hand, consortia should not become clubs of wealthy and
powerful regions that organise themselves to promote their own partial interests. Biodata are
all of great scientific value and their effective management should, as far as possible, benefit
evenly each human community and not reflect current economic or demographic inequalities.
Yet the existence of a large plurality of consortia will encourage a diversity of experiences
and solutions to the technical, administrative and ethical problems, while not preventing the
‘cultural selection’ of best practices.
—Next to the establishment of the local corporations, a world federation of them would be
needed in order to promote collaboration and to prevent forms of competition that would
undermine the preservation of high scientific and ethical standards. The mission of the
federation would be to guarantee regulations and coordination necessary to promote the goal
of empowering each community to use their biodata for promoting the health of its people.
The Federation should include all ReCiDa corporations worldwide and its regulations will be
binding for all of them. However, the Federation is bound by the same constitutive (and
constitutional) principles at the basis of the corporations. Its first principle is that each
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corporation has the exclusive and inalienable ownership of the biodata of its region and
community. The second principle is that like every single corporation, so the Federation is
pursuing the same goals, although at a global level instead that at the local level.
—Each consortium can propose 1 or 2 candidates for the steering board of the Federation,
which is composed by 45 members. The proposed candidates are collected in a list and each
consortium has 2 votes, but cannot vote its own candidates. The 30 candidates that receive
more votes are appointed. The other 15 members are drawn by lot among the non-elected
candidates. The steering board decides through majority rule. Each corporation has the right
to present instances to the steering board and to ask for audience.
—The Federation also establishes a solidarity fund, so that a small amount of the profit of
each corporation is used to help more disadvantaged regions and communities to improve
their data infrastructure.
San Sen Die then took a sip of tea, a long breath, then exhaled while looking at us with a
smile and concluded with the following words.
—That was a very concise account of a big vision, but I hope I have given you the key
elements. We have still time for a few questions.
Michel was quick to seize the opportunity.
—That is a most fascinating plan, but I think it is hard to accept that individuals are deprived
of their right to own and control their own data. And not only is hard to accept, but is it
practicable at all?
—Thank you, I was expecting this objection. You are right, individuals would not own their
biological data, but is this a problem? What have they lost? The only loss is the right to
decide what their biological information should be used for, but this does not seem to be
either a significant or a well-founded right. Once the statute guarantees that data will be held
safely, anonymously and not circulated—remember only the result of a query over
22
aggregated data will be circulated—and that data and the profit they generate will be used to
promote the public good of population health, what reasonable objection can be raised by an
individual against such an arrangement? What would be the important gain of exiting the
corporation? If we accept that people do not have a right to relinquish their citizenship except
by joining another state, which reason can there be to grant them a greater prerogative in
leaving a biodata corporation statutorily devoted to the interest of the community to which
they belong? By contrast, if individuals are left the ownership and the control over their data
two problems are left unsolved. By retaining ownership over their biodata, they can alienate
them and become very vulnerable to pressure, deception and hardship. Just as we have
learned that people are better off if they are not granted the right to sell themselves into
slavery, I contend that people are better off if they are not granted the right of giving away
their biodata and these instead are administered by citizens corporations bound by statute to
use them only for the good of the community. This is the principle of constitutionalism
applied to biological information! If citizens instead were to enter into a data market without
any significant bargaining power they will obviously be extremely vulnerable in the face of
actors that enter the market with many more resources and capabilities. Individuals will be as
vulnerable in the market as infantry recruit amidst well experienced tank divisions. As
corporations instead, they will be at least comparable to well-trained light artillery brigades
with anti-tank guns!
—Coming back to the loss of control over which use is made of the data, I believe this right
is morally problematic because it enables people to deny or withdraw permission to use their
data out of prejudice, bigotry or even hatred. Why should anyone be allowed to deny her data
to a research because, let’s say, it would benefit an ethnic minority, a disabled group or
sufferers from a rare disease? Once it is secured that data will not be used to discriminate,
harm or exploit people, individuals do not need to have any more say about their use. It is a
23
choice that belongs to a collective body and that needs to be fully informed by scientific
expertise and social contexts. We should accept to relinquish the right to specific consent, just
as citizens we do not claim the privilege to decide to withdraw the percentage of our taxes
that goes to fund initiatives that we do not like, approve of or directly benefit from.
—In terms of feasibility, citizens would still have the right to the non-commercial use of their
own data. So, citizens would still be able to use and establish services like, say, 23andMe and
Patients Like Me. But circumstances would clearly be very different, let us see how. Let me
begin with Patients Like Me, which is a social network of patients who voluntarily share their
information with other patients. Patients can choose whether to use their real name or not, the
information that they post is freely available on the web and other information collected by
the platform is sold, in anonymised and aggregated form, by the company to third parties.
This business model would no longer be possible. But patients networking would be enabled
through the Federation of ReCiDa corporations, which would make possible both the selfhelp component of health networking and the citizen science component, but any commercial
use of the data would have to share its profits with the corporations and be consistent with
their mission.
—23andMe instead is a commercial direct-to-consumer provider of genome sequencing. In
this case as well, the presence of the corporations will profoundly change things. Each
corporation will decide whether to collect and sequence DNA samples from every citizen.
They could also decide to leave an opt-out option to them, or to do it on a voluntary basis,
just as they will decide what policy and options for returning of results they offer to citizens.
So, we can imagine some corporations to offer the service nowadays provided by the like of
23andMe, although of course on different terms. Other corporations will not offer this service
and thus would leave open a business opportunity for private companies. The ReCiDa
corporation would still act as an intermediary body between citizens and private providers. In
24
this case the private provider will pay the corporation for collecting and storing the sample,
which, remember, is the corporation’s own property, but, if required by an individual, it
would allow a third party to make an analysis of the sample and the individual customer to
access the results, which again will belong to the corporation. Notice that in such a case it
would not be the biological sample that would go to the private company, but this latter
would have to send its analytical equipment to the corporation’s biobank, so that the private
company would be paid by the customer for performing a service, but would not have any
chance to keep samples or data, which will be controlled by the corporation. Service provider
would be in a position similar to users of Netflix or Spotify: no ownership, no control! But
you can also see analogies with developers of apps that act within the constraints set by the
system owner.
—Wow —exclaimed Michel— this is really a Copernican revolution! But your analogies are
very powerful in reminding us that digital technologies have already brought about, in a few
years, comparable revolutions. As you say, we do not own anymore the music that we play
and libraries do not own any more the journals to which they have a digital subscription. If
we have alienated such ownership and rights to for-profit companies, we could as well
alienate our biological data to companies that are bounded to use them for the public good.
San Sen Die looked very pleased with this remark and added:
—We have also become very used to relinquish control over much of our data, just in order
to be able to use services: we are offered very bad conditions, stated in long and hard to
understand legal agreements, which we sign out of frustration: because we hate wasting time
on them and because we feel we have no alternative. So, we give up and give in. But suppose
we extended my proposal to all personal data…
25
But at this point Darya interrupted her. And while I was very interested in hearing what she
was saying, it was easy enough to see where she was heading. Thus, it was maybe wise of
Darya to bring us back to the main topic.
—I am sorry to interrupt you San Sen Die, but I see that you have only a few minutes left and
I want to make sure that we got your key idea right, before we broaden the discussion.
—I think you are right— conceded San Sen Die.
—So, sticking to biological data, can you please first clarify how do you see the relation
between biological tissues and biodata, and then summarise what would be the advantages of
the system you suggest?
—Sure— She paused for a few seconds to reflect and then she went on. —I’m afraid I cannot
give a very detailed answer to your first, and very important question, because it will take us
into too many technicalities. I have decided to talk of data because often, but not always,
tissues are important as data sources. Again, this is not always true, just think of organs,
blood, or even cell lines, but if we find a solution that is convincing for the more abstract and
immaterial goods that are data, I think we would be in a better position to tackle the problem
of tissues as well. Furthermore, there is a strategic advantage in starting with biodata: they are
easier than tissues to convert into intellectual products for which intellectual property rights
are legitimately claimed. It seems that collecting, aggregating, storing and curating data is
enough to turn them into semi-finished intellectual products that deserve to be protected by
intellectual property rights. Both in the case of data and of tissues, collective ownership
would not mean unrestricted freedom to use, but would be tempered by individual rights: the
right to privacy in the case of data and the right of bodily integrity in the case of tissues.
—Coming to the advantages of my proposal, it would have three obvious benefits. The first is
the scientific benefit: the greatest resistance against individual ownership of tissues and data
has been that it would hinder scientific progress either by undermining the integrity and
26
scientific significance of the data sets, or by threatening the profitability of private
investments in research and development. The ReCiDa solution would solve the first problem
and would create a new legal situation that would reduce profitability for private investments,
but at the same time would be much more predictable than conferring property to individuals.
In fact, this would turn the biotech market into a less speculative and hence less volatile one.
The second benefit would be in terms of economic equity: each community and region will
profit from all the commercial uses of their data and could earn the money to fund high
quality data collection and maintenance. The third benefit would be for public health. The
value of each corporation’s data will depend on their quality, so that each region will have a
strong incentive to collect the broader and more accurate and integrated biomedical data sets.
Having such data would greatly help the local communities to understand their health
situation, needs and problems. And remember that data will be collected for the benefit of the
local population, as required by statute. So, the ReCiDa corporations will have the right
incentives to try to combine high quality biological data, with equally high quality
epidemiological, socio-economic and environmental data. That will maximise their user value
as well as their commercial value, and will address the worry that commercial interest would
take priority over public health strategies. Finally, having such data bonanza would enable
health authorities to evaluate whether pharmaceutical and other products have been tested on
populations that match their bio-socio-environmental circumstances and if the differences are
significant enough more evidence may be required. This could be in the form of a new
randomized clinical trial performed on a cohort that reflects the local population; another
possibility is granting only a provisional license, to be confirmed or discontinued after an
observational trial has been performed on the first cohort of patients receiving the treatment.
The corporation will be in an ideal position to assess the clinical effectiveness of treatments
and diagnostics on its specific population.
27
At this point I could no longer resist my urge to enter the conversation and air some of my
thoughts.
—I don’t want to deny that your proposal has many interesting points, some of which will be
worth taking up. But in some respects, it does not seem so novel, while in other respects it
does not seem feasible. For instance, the model of a charitable trust for biobanks had already
been proposed a dozen years ago by Winickoff, and in Norway, actually in the Norwegian
region of Nord-Trøndelag, there is an interesting example of a publicly owned bioscientific
company created to exploit the commercial potential of the local biobank. All the profits
generated by this company are to be used to benefit the community through research or
medical care. So, in a way there are already examples of what you suggest. Yet, I also have
some reasons for doubting the viability of your plan. The first reason is that implementing
such an ambitious project would require creating a very strong consensus around it and
mobilising considerable resources. Neither seem to me forthcoming, especially in the current
political and economic climate. One thing is to realize a publicly owned local biobank in a
region with a strong culture and tradition of cooperation and collective action, a region
moreover belonging to an extremely wealthy country; quite another challenge is to propose it
as a global model. The second point is that with all the limitations that you are prefiguring to
commercial exploitation and with requirements such as evidence of effectiveness in local
circumstances, the prospect to turn biological data into profit dims and with it also the
possibility for the ReCiDa corporations for making substantial earnings out of their expensive
data. The economic viability of the scheme is not at all clear to me.
—You can’t resist bursting our bubble, can you?— Jested Michel.
And then Darya voiced again her concern about our getting the most out of the little time that
was left.
28
—These are serious worries and you don’t have much time left for us San Sen. How long can
you still stay and can you manage to address these objections.
—I only have few minutes left. So, let me try to answer at least the first question and then,
my dear Darya, you will have to step in and act as the advocate of our plan, since I have
shared with you my ideas on many occasions. I am glad that Johannes mentioned the
experience of Nord-Trøndelag and I could add the UK biobank, which is run as a charity. He
should also have mentioned that studies have shown that the people of Nord-Trøndelag are
suspicious of commercialisation: they are prepared to act out of solidarity, communal spirit
and altruism but they feel cheated, like many other people across the world, if somebody
appropriate some of the knowledge derived from their data and make substantial profit out of
patients’ health needs. People don’t accept that the game starts like a disinterested,
philanthropic enterprise and then, after they have contributed, it turns into a for-profit,
capitalist game.
But what I want to stress is that the plan that I have here only sketched is much more
developed, and it is not an abstract ideal, it is something that is already informing a broad
range of activities aimed at bringing it to reality. We are an extended network of people, the
core is here in the Far East, but we are strong in South America, Scandinavia, Australasia and
some parts of Africa and the Arab world as well. We are working under the radar, because we
need to grow strong before vested interests try to shut or undermine us. But we are very
active at various levels. We have already won some regional health authorities to our case,
and some local biobanks. We are working hard to build a consensus around our proposal
within some working group and regional branches of the WHO. Surprising as this may seem
to you, we are winning the support of some health ministers. I really cannot give you any
more details, in fact I should have not even said so much. However, our plan is to come out
into the open soon, as soon as we will have managed to have a strong support within the
29
WHO and from other influential international organisations like UNESCO and NGOs and
charities. At the same time, we need to have enough regional authorities prepared to embrace
the idea, establish their local ReCiDa and come together to set up the first two international
consortia. At this point there should be a large and concerted effort to mobilise public opinion
around the world to support new international regulations around biological data, while
having a number of institutions prepared to pioneer and back the new approach. The strategy
is to arrive at a point where we can say: look it is the right thing to do and we are doing it, it
is here, it is a reality supported not only by compelling argument, but by international
organisations, a number of countries and local governments and there are businesses too that
are ready to work with the citizens corporations. Thought and action will have to go together.
I do not believe in abstract ideas, we are building a strong network, a broad coalition, and we
are doing things and learning by doing. I hope this answers your first objection Johannes.
And actually, I hope I have won two more supporters to our cause!
—May I just ask you a couple of questions?—Asked Michel.
—Sure.
—Is your proposal consistent with the principles of the Helsinki Declaration? Can individuals
abstain from participating and contributing their data? Can they withdraw? Can this be
reconciled with preserving the comprehensiveness and integrity of data sets?
—Well it depends on the kind of data we are talking about. The world has changed a lot since
the Declaration was drafted, and one main change is that we are now living among a data
deluge. To keep it short the idea is to retain the principles of the Helsinki Declaration for all
those data and for all the kinds of personal involvement in research that are more demanding
in terms of time, risk, effort or that are perceived as violating the bodily or spiritual integrity
of the person. But for all the data that can be collected without bothering people or violating
their control over their bodies, then the strategy has to shift from empowering individuals to
30
say no, to make study designs sensitive to participants values and empowering communities
to say what these data should be used for and how are the benefits to be shared. The main
challenge that I see is to mediate between the flexibility needed to accommodate cultural
differences around bodily and spiritual identity and aspiration to internationally standardised
and complete data sets. Unfortunately, now I really have to leave you. Thank you for having
listened so attentively to my talk.
She smiled, hinted at a little bow with her head and waved goodbye while her smile turned
even sweeter and slightly melancholic.
—Thank you very much for your time San Sen Die, have a nice day and speak soon—Said
Darya.
—Many thanks, bye—Echoed Michel and I.
Darya shut down Skype and then turned towards us. —I’m not sure that right now I’m up to
the task of defending San Sen Die’s proposal from Johannes’s second objection. I will need
to do a little ...anamnesis!—And she winked—Let’s just have a very short round of
comments and then I’ll let you go: I know that you both have to leave early tomorrow
morning, but I’m too curious not to have at least a quick feedback.
As far as I’m concerned—said Michel—I’m rather fascinated by her proposal: I think that in
terms of empowering citizens and consumers of biomedical technologies it is a very powerful
idea, perhaps the only way of effectively counterbalancing the current preponderance of
corporate power. I would have been very curious to hear more about expanding the model
beyond biomedical data because it seems that these regional data corporations could be to our
digital and big data age what trade unions have been to the industrial age. But, as I voiced in
my question, I’m concerned about the fact that collective ownership may undermine respect
for individuals and their autonomy. It’s true that autonomy does not work as an effective
bulwark against dispossession and unfair and exploitative practices, but it is nonetheless a
31
precious achievement that I’m not prepared to sacrifice. I am also very curious about whether
and how it would work the pragmatic argument for assigning data ownership to regional
corporations. We surely need fresh ideas to fuel a good debate on the foundations of property
in the digital and biotech age.
—I am less concerned than Michel about autonomy—said I—, which will still be strong
when discussing other issues in medical and research ethics: if some precautions are taken I
don’t think it would be undermined by the collective ownership of data. In this respect, I have
found fascinating San Sen Die’s hint at constitutionalism: benefiting local communities, fair
sharing of profits and respect for individual integrity and liberty can be turned into effective
checks and counterbalances to the collective ownership. I am perplexed by the economic
viability. On the one hand, if it worked, her model would make biotech markets more stable,
less fluctuating and would temper the cycle of bubble and crash. And this would also help to
reduce the need of hype around science and innovation. On the other hand, I see a real chance
that within that framework investment in innovation would drop and that capital may move
towards other sectors. Just think of how markets reacted in 2000 to the Clinton-Blair
statement that the human genome was to be made freely available to all researchers:
biotechnology stocks lost more than 12% of their value in a day. To come closer to the data
corporations, even without having to meet particularly ambitious social goals, the Icelandic
biobank deCODE went bankrupt. And the Norwegian public corporation I referred to earlier
in its first five years of existence managed to sign only a couple of contracts with commercial
partners. Whether driving out speculative capitalism is a blessing or a curse, I frankly don’t
know, but financial viability and sustainability are serious challenges.
—You both raise very interesting issues.—started off Darya—On my part, I am particularly
fascinated by her commitment to keep thought and ideas connected with praxis, action. We
started evoking Augustine’s image of two cities and I think that San Sen Die’s aspiration
32
reminds us that the city of scholars, at least when we talk of ethics and politics, is not an ideal
community like the city of God. On the contrary it is a community whose ideas can only be
tested and vindicated in the city of actual human beings. Ethical and political ideas are not
validated by winning scholarly debates, but by informing successful action in the real world.
Removed from the test of action and practice, ideas become purely academic and scholastic.
In the last decades there has been an attempt to promote the transfer of academic knowledge
into the real world, but the effort has been focused overwhelmingly on transfer of knowledge
and technology to industry and the private sector. We need more knowledge and technology
transfer that is not simply directed to private profit and some wishful spill over to society at
large. I see what San Sen Die is doing as an inspiring example of this kind. However, I don’t
want to hold you back any longer.
Let’s take some time to digest what we have heard and then we can have a nice discussion
when we meet again or over Skype.
We all agreed that this was a sensible proposition, left the tiny Internet Cafe, warmly said
goodbye to each other and headed back to our accommodations. Unfortunately, we never
managed to find the time for the follow-up discussion. But now more than three months have
elapsed from that most interesting encounter with San Sen Die and I am no longer bound by
my promise to keep all information confidential. Therefore, I believe I am doing a good
service to her and to the readers by sharing her most interesting vision, although I must
confess that fascinating as her ideas are, my doubts have not died away.
Acknowledgements
Previous versions of this paper have been presented at the VERP seminar of the department
of Philosophy and Religious Studies, NTNU Trondheim, and at the RESET group seminar,
NTNU Trondheim. I am very grateful to the participants for their helpful feedback; special
33
thanks go to Lars Ursin who helped me to fully appreciate how interesting the example of the
HUNT biobank was for my dialogue. Michele Loi (University of Zurich), Tsjalling Swiestra
(University of Maastricht), Annamaria Carusi (University of Sheffield), Ragnhild Folkestad
(NTNU Trondheim) have read earlier draft of the paper and given encouragement and useful
feedback.
Bibliographical appendix
This short biography is not meant to be exhaustive, it simply offers a sample of literature that
either has inspired me or that is covering the main themes discussed in the dialogue or that
constitute the background and antecedent of those debates.
The works in this bibliography provide evidence for the factual premises and most basic
assumptions made by the characters, while with respect to the opinions, value judgments and
normative suggestions, the works listed here should not be seen as providing support, but
rather to offer a broader range of arguments and reasons, sometimes supporting and
sometimes representing opposite or alternative points of views as compared to those of the
characters in the dialogue.
Photos of Leuven City Hall and Mole Antonelliana
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https://upload.wikimedia.org/wikipedia/commons/8/83/Mole_Torino.jpg
More’s Utopia:
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(originally published in 1516).
34
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Sunder Rajan, Kaushik. 2006. Biocapital: The Constitution of Postgenomic Life. Durham N.C. and London:
Duke University Press.
35
Washington, Harriet A. 2001. Deadly Monopolies. New York: Random House.
Newspapers, Magazines and websites
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36
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Scholarly Literature
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37
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38
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