IEEE Technology and Society Magazine - June 2019 - 63

B

iobanks are not new. However, the
scope of their application is growing, especially in genomics. Biobanks are also currently being reorganized to enable more genomic
samples to be made available for
different types of studies. Some
future uses of the biobanks cannot be anticipated.
These developments conflict with requirements for
provision of informed consent at the moment of
recruitment for studies. A procedure known as
Dynamic Consent (DC) has thus been proposed that,
based on information and communication technologies (ICT), should allow participants to consent in real
time to projects in which their samples and data may
be of interest.
In addition, DC would empower participants through
ongoing access to information and communication and
direct consultation. As such, DC aligns itself with other
ICT projects in claiming to be a democratic tool. We critique these claims and highlight their adverse impacts
in order to examine the ethical and political consequences of transforming research participants into
ICT users.

What Is Biobanking
Biobanking can be described as "the organized collection of biological samples and associated data" [2].
Biobanks have become particularly crucial tools in
genomic research. Because the scientific value of
such collections increases with their size, large-scale
biobanks have been widely developed, making samples and data available to different studies [19], [20],
[22], [29]. By opening biobanks up for multiple uses,
some of which cannot be anticipated, recent developments in biobanking make it complicated to specify to
research participants the exact nature of the studies
in which their samples will be used. Such developments thus conflict with the application of the ethical
and legal standards governing biobanking, which stipulate that samples obtained through participants'
donations must be subject to informed consent [4],
[7], [12], [21], [33].
In response to these developments, the ethical
debate has focused mainly on determining the most
appropriate nature of consent obtained [14]. The dilemma involves two apparently contradictory requirements
[4]: to respect ethical imperatives on the one hand [13],
and to encourage "modern" scientific practices on the
other [1]. If consent can no longer be "narrow" (that is,
specific to a particular research project), should it be
extended to cover a certain type of research [11], or
even constitute fully open consent to all types of
research [13], [42].
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Among the various procedural proposals, one has
been formulated that seeks to resolve the tension
between principle and innovation using technology. This
approach, known as Dynamic Consent (DC), is based on
information and communication technologies (ICT) and
should allow participants to consent in real time to projects in which their samples and data may be of interest
[17]. DC would transform its users into active participants through ongoing access to information and communication and, ultimately, empower them through
direct consultation [1], [15], [16], [33], [37]. As such, DC
aligns itself with other ICT projects in claiming to be
intrinsically open, transparent, efficient, digitally
"social" and thus democratic [25]. Such claims have
already been critiqued and their adverse impacts highlighted in the fields of digital humanities, media studies,
history of technology, and political science [24]. We
apply these critiques to DC in order to examine the ethical and political consequences of transforming research
participants into ICT users.

Background
Biobanks are not a new phenomenon in biomedical
research. However, their scope of application is growing, especially in genomics [26]. To accommodate a
network-based approach to genomic research, some
biobanks are reorganized to enable more samples to
be made available, not only for studies on rare genetic
disorders (that require the comparison of difficult-tofind specimens), but also for research on common diseases with greater statistical significance [16]. Not only
are these biobanks growing in networking capacity
as some local collections are turned into permanent national institutions (e.g., in Iceland (1998), Estonia (2000), Singapore (2002), Japan (2003), Canada
(2004), Latvia 2006), U.K. (2006), Denmark (2010),
France (2011), South Korea (2012), etc.) or regional
infrastructures [3], [19], they are also extending in duration as genetic material can be reproduced almost endlessly [30]. In large-scale biobanks, therefore, samples
can be sent to laboratories in other countries and be
used for different types of studies, some of which cannot yet be anticipated.
These technological and organizational improvements in the field of biobanking have deeply altered
the way in which biobanks function and have raised
some challenging questions in the field of research
ethics [43]. Participants can no longer be informed of
the specific scientific projects for which their contribution will be used and the detailed conditions surrounding the research to which they are contributing.
Variability and uncertainty threaten the informed consent procedure, the objective of which is to ensure that
participants understand the aims and risks of the

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