IEEE Technology and Society Magazine - June 2019 - 68

neither allows individuals to transcend into a group, nor
gives direct access to authentic popular expression.
Still, according to some of its proponents, DC would be
intrinsically democratic because it would make it possible to consult participants directly [37]. Democracy is
thus reduced to one dimension, that of consultation,
without further consideration of deliberation, which in a
democratic body is supposedly the process that helps
promote the general or common interest.
But what kind of consultation would DC allow anyway? With consent, the decision-making power of participants is reduced to two options: participation or refusal
to participate. Not only does the exercise of democracy
thus reduced to mere consultation preclude any possibility of deliberation, it does not allow individuals to justify their choice. Opting-out seems to be the only way to
express an unfavorable opinion. But how will this
expression of disagreement be interpreted? If the
refused consents are overwhelmed by a majority of
granted consents, will they be taken into account? And
after how many refusals will the inclusion of a participant in the biobank no longer be considered profitable?
Finally, if we follow the analogy between DC and voting,
we may fear that these refusals may only be considered
as abstentions, which are rarely considered as meaningful expressions of opinion in our democracies.
The spatial metaphor of "inside" (opt-in) and "outside"
(opt-out) clearly marks the division between those who
commit to the biobank and support it, and those who do
not simply express reluctance or criticism but choose to
leave it, to desert it, thus abandoning their role of participant. If consent becomes a vote, then those who vote
against might well be treated as abstainers whose reasons for doing so will not be explored and who will have
lost legitimacy as a participant. Yet, for lack of any other
forum for deliberation, as DC would have diminished the
role of ethical committees, this small window remains
the only one through which to express criticism.
As such, DC, as a tool of governance, would allow
the institution to be ruled by means of a permanent,
false plebiscite. Why false? Because participants only
consent to their personal preferences - the concept of
the informed consent procedure is ultimately to decide
for oneself - without considering that these choices
will ultimately determine the scientific research policy
of the biobank. And why permanent? Because, unlike
opportunities to vote in a democracy, requests for consent do not stand as one-time, significant events but
many isolated and repetitive micro-acts that, once
aggregated, will constitute the basis for policy over an
extended period of time without any sense of a long
term. Consent cannot, therefore, be equated to a vote.
Ultimately, DC relies on the hypothesis that research
participants will commit to their active involvement in

the biobank and will not be inconvenienced by receiving
regular requests relating to topics that are not necessarily of interest to them. The only "solution" for participants who would be inconvenienced by such contact is
to agree by default. It should be noted that this last
option is directly equivalent to the concept of fully open
consent that the dynamic consent proposal was intended to avoid. The fact we have come full circle raises an
important question: if biobank regulations, adopting a
narrow interpretation of the autonomy of research participants, forbid the practice of open consent, how can
this solution be acceptable? If DC is just an ingenious
way of diverting a law that is ill adapted to today's science, there is an urgent need to question research ethics, the goal of which should not be to find technological
solutions to circumvent laws, but to provide arguments
as to why the laws should be changed.
More profoundly, DC is not simply regression to open
consent; it is presented as a "solution," implying that the
problem is settled, when in fact it relegates governance
problems to the implicit dimension of technology rather
than addressing them at a social and political level. Opting for open consent by default in a system involving
individualized decision-making is not the same as proposing open consent: it does not provide the arguments
that support such orientation and prevents any further
form of collective deliberation.
For the anthropologist K. Hoyer [14], if questioning the
consent procedure is the form taken by the debate surrounding the ethics of biobanks, despite the fact that it
does not solve the fundamental questions posed by biobanking practices, it is because the consent procedure
provides a solution, at least at the organizational level.
Asking for a signature is not a panacea; it is a simple act
in light of the complex issues posed by biobanks. This
act constitutes a noncommercial mechanism for transferring the ownership of human body elements to the
biobank and thus, at least superficially, bypasses a genuine legal difficulty [52]. It may also be regulated and, in
this area, the academic debate cannot be separated
from the regulatory aspect. The authors who publish in
academic journals are, for the most part, engaged in the
construction of regulatory frameworks for biobanks,
which explains why their reasoning is oriented towards
finding practical solutions: "A great part of the biobank
literature should probably be read as a story about
organizational decision-making rather than ethical reasoning" [12, p. 442].
With DC, this is taken one step further, because an
important part of biobank ethics disappears over the
horizon of public affairs. The issue here is not about giving research participants the opportunity to opt in to
research under the same terms as those offered for
open consent, but that this option, once mediated by

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JUNE 2019

IEEE Technology and Society Magazine - June 2019

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