IEEE Technology and Society Magazine - June 2019 - 65

On the one hand, this limitation is itself limited,
given the very high penetration of Internet access in
all the territories likely to develop research infrastructures and the adaptation of different generations to the use of ICT. Sociological studies and a
report by the European Commission show, for
example, that "digital natives," i.e., those who have
grown up in the ICT environment, are less competent than their elders when it comes to exercising
critical thinking on digital culture [44].
■ On the other hand, condemnation of the digital
divide as a great injustice that would hinder the
advent of direct democracy shows a limited understanding of the nature of political life and of all the
political problems posed by these individualistic
usages. It is a safe bet that the provision of WiFi
throughout our territory does not ipso facto
improve our practice of citizenship and that the distribution of digital tablets to all biobank participants
would not automatically inspire in them the desire
to deliberate on and evaluate the merits of the
research and the risks they face.
■ By referring to the digital divide as the only restriction to more democratic governance of biobanks
through the use of DC, its proponents reveal both
limited knowledge of ICT usage, and a singular view
of democracy as a means of broadening the base of
consultation and not as an opportunity for public
deliberation to address collective problems.
Consequently, there are legitimate questions to be
raised as to which form of power would be enabled by
DC technology, how this technology-based procedure
would fit within biobank governance, and more generally, whether this shift of power would enable the pursuit of the general good. Such questions have not yet
been considered from a technological perspective, taking into account the adverse impact of ICT already highlighted by scholars in digital humanities, history of
technology, and political science. The potential of using
ICT-based solutions to resolve complex social, political,
and ethical problems is indeed under academic scrutiny and has even been labeled as "technological solutionism" [24]. According to this Internet-centered
ideology, technology, if given the right tools (codes,
algorithms, robots, ICT), may be able to solve any type
of problem, making life "frictionless" and "trouble-free."
However, Morozov warns that, from the "solutionist"
perspective, problems themselves are being identified
a) according to the type of solution offered by the technology, and b) according to "values" projected upon the
Internet and considered intrinsic - among them the
imperatives to be open, transparent, efficient, and
digitally "social." As such, when embarking upon the
use of DC in biobanking, there is a risk that ethical
■

JUNE 2019

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Interconnected ICT user communities
fall short of constituting a public able
to deliberate on a common good.
issues a) will be treated as technical problems to be
solved, b) will be contaminated by values associated
with the technologies themselves, and c) will ultimately lack the specific type of complexity that research
ethics requires.
We therefore examine the potential offered by DC
through comparison with other types of ICT and critiques of such, in order to determine the ethical and
political consequences of transforming research participants into ICT users.

Focus Setting: Individual Preferences
versus Public Interest
Participants, using DC, are invited to select their personal preferences for each project for which they are
solicited. The DC "user experience" is thus designed to
provide a succession of proposals and a continuous
flow of information, ideally allowing real-time communication between biobanks and participants. The temporality of DC is key to understanding both its potential
positive and adverse impacts. Biobanks, designed for
the long term, can through real time connections with
participants allow for a series of decisions corresponding to time sequences that make sense at the level of
individual commitment. DC can thus be considered a
"time management" technique that divides and organizes the institutional temporality of the biobank, while
focusing on individuals [45]. But the redeployment of
time scale at the individual level is not a trivial gesture:
dividing, segmenting, and individualizing time are
activities that reconstruct "an overall movement and a
common course that is not performed by a real group
of people or and does not constitute a shared experience" [46, p. 54].
This focus on individuals and their preferences is typical of the ICT user experience. More than a decade ago,
ICT had already been shown to enable the isolation of
online news consumers compared with those reading
the paper editions [47]. Through the configuration of
their personal preferences on websites and the algorithmic-based orientation of news feeds according to the
viewers' browser history, Internet viewers were shown to
have access only to preselected types of information.
Although comfortable and efficient at the individual
level, this personalized access to the news was

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