IEEE Technology and Society Magazine - June 2019 - 69

technology and offered in an individualized form,
becomes a legitimate regulatory instrument even
though its content is no longer debatable or negotiable
at a collective level. Once incorporated into technological objects, regulations become more difficult to question and review: they blend into our environment, as
part of the invisible background of infrastructure, and
no longer appear problematic. If a problem is important
enough to require regular revision and adaptation to
socio-political contexts - as is certainly the case with
the ethical issues surrounding biobank infrastructures - then perhaps we must refrain from delegating
too much of the science governance to technology. The
challenge here is to re-evaluate our definition of the
common good on a regular basis, that is to say, to think
about what it is possible to authorize in the name of science, and not to endorse a modus operandi by default
on the pretext that it gives an illusion of autonomy.

DC and Technological Solutionism
The consultation of individuals is essential in order to
respect the autonomy of the participants in biobanking
research. We should remember that, while dynamic
consent has come to occupy a major place in the range
of proposals aimed at organizing biobank research, its
primary purpose is to offer protection to participants.
The fact that dynamic consent can be used as a mode
of governance is only a secondary consideration. But,
this second function cannot be achieved at the individual level, not only because an individual's consent or
refusal to consent has no (or little) weight in the face of
the thousands, even hundreds of thousands, of participants in the large-scale biobanks, but also because
through ICT, research participants start being treated as
an audience rather than as a public. DC creates a new
space in biobanking governance, closed to deliberation,
and lulled by the illusion that the expression of individual opinions is enough to produce a collective undertaking aimed at the realization of a common good. As
such, DC is not a panacea for democratizing research,
even if it is an extremely practical solution for circumventing regulatory issues.
In the course of this analysis, ICT user communities
emerged only as crowds whose wisdom boiled down to a
power of statistical evaluation. These interconnected collectives fall very much short of constituting a public able
to deliberate on the public good, even at the expense of
delegating its powers to representative bodies. And to
the extent that consultation is largely determined by the
format of communication, we must ask ourselves if it is
better to delegate our powers to the engineers designing the systems intended to assert our position - systems that, once in use will become transparent, invisible,
and difficult to question - or to institutions composed of
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members selected for their competence, taking responsibility for their decisions, working for the common good,
and pledging to review their decisions regularly in an
uncertain world. Nothing in our history can reassure us
that the crowds will be wise (this time, in the strongest
sense of the word) or that the dissolution of public
responsibility at the discretion of the networks, the individualization of interests, and the absence of public
deliberation constitute the progress of democracy.
There is no doubt that we should be less focused on
a technological solution to the challenges facing postgenomic science and the questions they raise for all of
us about the meaning of our communities and the value
we attach to our personal data, and that we should be
more focused on an ethical and political response to
these challenges. In the biobank research ethics community, however, the current trend with respect to DC is
to question how one technology (ICT) is being called to
the rescue of another technology (biobanking). Such a
line of reasoning raises many questions. How can technological developments such as large-scale biobanks
force us to revise principles adopted collectively and to
seek a solution in a technological offering? How useful
do we expect biobanks to be, to let them impose themselves as inevitable realities and unfold their own logic
of prescription? Finally, through this personalization of
ethical procedures to the detriment of their collective
dimension, DC raises a critical point about our lives
with ICT: what are we willing to abandon as citizens for
an illusion of autonomy?

Author Information
Alexandra Soulier is a postdoctoal researcher with the
Center for Research Ethics and Bioethics (CRB), involved
in the SIENNA project (stakeholder-informed ethics
for new technologies with high socio-economic and
human rights impact), Uppsala University, Uppsala,
Sweden. Email: alexandra.soulier@gmail.com.

References

[1] I. Budin-Ljøsne et al., "Dynamic consent: A potential solution
to some of the challenges of modern biomedical research," BMC
Medical Ethics, vol. 18, no. 1, p. 4, 2017; http://bmcmedethics
.biomedcentral.com/articles/10.1186/s12910-016-0162-9.
[2] A. Cambon-Thomsen, "The social and ethical issues of postgenomic human biobanks," Nature Reviews Genetics, vol. 5, no.
11. pp. 866-873, 2004.
[3] A. Cambon-Thomsen and E. Rial-Sebbag, "Governing biobanks
through a European infrastructure," in Ethics, Law and Governance
of Biobanking (The International Library of Ethics, Law and Technology), D. Mascalzoni, Ed. Dordrecht, Netherlands: Springer, 2015; pp.
139-151; http://link.springer.com/10.1007/978-94-017-9573-9.
[4] T. Caulfield and J. Kaye, "Broad consent in biobanking: Reflections on seemingly insurmountable dilemmas," Medical Law Int.,
vol. 10, no. 2. pp. 85-100, 2009.
[5] O. Corrigan, "Empty ethics: The problem with informed consent," Sociology of Health and Illness, vol. 25, no. 7, pp. 768-792,
2003; http://doi.wiley.com/10.1046/j.1467-9566.2003.00369.x.

IEEE TECHNOLOGY AND SOCIETY MAGAZINE

https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-016-0162-9 https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-016-0162-9 http://link.springer.com/10.1007/978-94-017-9573-9 http://doi.wiley.com/10.1046/j.1467-9566.2003.00369.x

IEEE Technology and Society Magazine - June 2019

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