IEEE Technology and Society Magazine - June 2019 - 66

criticized for its political cost, as the public sphere
became "fragmented" into specific communities of
readers [47]. While there are still reasons to doubt that
ICT - and the comfort, ease, and personalization associated with its use - will automatically translate into
enhanced democracy, the empowering usage of ICT
remains at the source of a plethora of Internet-based
utopias [24].
One may therefore wonder whether, just as setting
personal preferences when accessing news could have a
political cost in terms of community cohesion, part of
the collective venture of engaging in a biobank could be
lost if participants were to be considered as isolated
users, focused on their own preferences and deprived of
long-term consideration. If it were up to each user to
decide only on what suits them, how would it be possible to achieve the public good at which scientific
research is supposedly aimed? From a theoretical point
of view, this public good is not conceived of as the sum
of individual preferences but refers to the idea of a good
shared by members of the same community. Dynamic
consent does not contribute to achieving this aim.
From a practical point of view, the weight that individuals would carry in infrastructure projects with
hundreds of thousands of participants is doubtful. If
only a few individuals refuse to consent and a multitude of research participants consent - whether for
good reason or because they did not take the time to
consider the biobank's proposal and opted in by
default - what power then lies in the hands of the
individuals? The type of power that would emerge in
this type of "users' assembly" needs to be examined
and compared with other ICT-based proposals to reinvent democracy.

Forming a Collective of Users:
Aggregation versus Assembly
The creators of DC consider it a potential instrument of
governance that would enable the redistribution of
power and responsibilities, especially between participants and ethical committees [17], [37]. In the broad
consent model, crucial decisions are indeed given to
ethics committees who, for instance, decide when
developments occurring within biobanks are substantial
enough that research participants need to be informed
of such changes and re-consent requested. DC however
allows for a continuous stream of information and consent processed directly by research participants, under
the assumption that participants will be committed
enough to follow the biobank's evolution and to protect
their interests accordingly.
There are, however, at least three potential flaws in
such reasoning. First, the relationship between the
delivery of information and actual understanding or

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knowledge is not straightforward [48]. Just because individuals are caught in a continuous stream of information
does not necessarily mean that they have a more accurate understanding of the phenomena involved. Second,
providing access to information does not necessarily
mean that participants actually access the information.
This is the difference between publicity and advertising.
For information to be disseminated, taken into account,
and for it to contribute to the formation of a point of
view, the public dimension of communication needs to
be emphasized [49]. Under the present system, the
absence of mediators, the opportunity cost of information (which takes into consideration that there is no reason for biobank-related concerns to take precedence
over other types of concerns in a citizen's life), and the
possible incapacity of some participants to process complex information are all obstacles to the formation of an
informed opinion. From this point of view, providing an
overload of information could even be detrimental to the
formation of enlightened public opinion. Third, such reasoning implies that the individual preferences of a large
number of people would, per se, be preferable to the
opinion of experts.
In the ICT context, this last assumption has been
theorized by James Surowiecki, in his book entitled
The Wisdom of Crowds (2004) [50], where he argues
that consulting a greater number of lay people may surpass a small pool of experts when asked specific questions: questions of cognition (e.g., estimating the weight
of an ox); questions of coordination (e.g., determining
the best time to go to work to avoid traffic jams, when
drivers can reflect together), and questions of cooperation (e.g., getting multiple independent teams with personal interests work ing together to improve a
company's overall results). In the third case, a form of
prudence is at work, which consists in knowing how to
go beyond one's immediate personal interest in pursuit
of a global interest (which in the corporate world where
it originates, should result in a better performance by
the company and, in the long term, reflect on the
employees). The specificity here lies not only in the
nature of the question asked but also in the type of
crowd formed: crowds can achieve wisdom only when
they are sufficiently diversified, decentralized and independent. In the case of DC, however, 1) one expresses
one's preference for oneself, and 2) it is difficult to
imagine how highly qualitative crowds could emerge.
To imagine that a large number of individuals, aggregated by whatever sophisticated technological means are
available, will produce a collective capable of self-governance is, in this sense, exceptionally naïve. Crowds
constituted by ICT are simply networks of users who
are not transformed, without political intervention, into
any kind of assembly.

IEEE TECHNOLOGY AND SOCIETY MAGAZINE

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JUNE 2019
IEEE Technology and Society Magazine - June 2019

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