IEEE Technology and Society Magazine - June 2019 - 64

Dynamic consent addresses the
tension between ethical principles
and technological innovation.
research and participate in a research project voluntarily, armed with this knowledge. Standard ethical
practice is to have face-to-face dialogue with potential
research participants but obtaining consent from individual participants under these conditions for each
specific research project has, until now, been considered unachievable [34]. There has, therefore, been
extensive and ongoing discussion about consent in
biobank research (see for example, [6], [11], [13], [33],
[36], [38]).
Until recently, ethical discussions on such issues
focused on the breadth of interpretation that the notion
of "informed consent" could embrace without the procedure being emptied of meaning and dismissed from its
protective role [5], [13]. If information on the uses to be
made of the samples has to be detailed and specific for
the consent to be considered informed, new biobanking
models cannot meet these ethical requirements. However, in contrast with this narrow interpretation of
informed consent, the possibility of "broad consent" has
been advanced, as a means to consent to a framework
of broadly defined future research [11], [21]. Although
not specific, the broad consent would still claim to be
"informed," as participants would be asked to re-consent
in the event of any change to the use of the biobank that
alters the previous framework. In this model, ethics
committees play a crucial role. They review each specific
research project, decide on whether the biobank's governance needs to be updated and evaluate whether the
current practices and research project types are still
aligned with the initial framework to which participants
consented or whether participants are required to reconsent. Although no consensus has been achieved in
the ethicists' community about which of the alternative
modes of consent meets the higher ethical standards,
the model of "broad consent" has been adopted in new
types of biobanks, such as the UK Biobank [40] and
CARTaGENE in Canada [21].
A third alternative has, however, been developed in
the last five years that allows research participants to
consent in real time to biobanking projects, via online
platforms, tablets, and/or cell phones. This device
provides a personalized interface between the biobank and the participants that allows them to consent
to their inclusion in each project for which they are

solicited - or to refuse it. Unlike paper-based documentation that sets out the terms for the inclusion of
participants at the beginning of the process, consent
in its dynamic form makes it possible to adapt to the
long-term interests of participants and researchers.
As such, it provides an efficient and cheap solution to
a seemingly otherwise inefficient and costly procedure relying on multiple exchanges of physical letters,
containing information, forms, and signatures. DC
allows participants to have continuous access to
available information and to withdraw relatively easily,
thus securing participants' voluntariness and right to
withdraw in an effective way. Dynamic consent (DC) is
the product of a union between normative reflection
and engineering.
Whether this form of consent would be transposable
in all legal contexts is questionable and its proponents
do not conceal the fact that its implementation requires
significant cultural change and adapted practices [17].
In countries where stating the nature and purpose of
research at the beginning of a genetic investigation is a
legal obligation, dynamic consent might not yet be
acceptable. But the level of specificity required for a
pre-consent information document to be effectively
"informative" is far from universally agreed upon. Furthermore, arguments in favor of DC embrace a broader
perspective than considering it a simple act of consent:
DC is an instrument of ongoing interaction and continuous communication between biobanks and participants
that can contribute to a climate of transparency and
thus reinforce trust and partnership between science
and society [1], [33]. DC could even be considered the
ultimate "democratic" tool in biobanking as only the
projects to which the participants agree would be carried out, thus enabling a shift of power that would not
only make research participants more active but also
put them in charge, or at least balance the power of
experts [15], [34].
DC's proponents acknowledge only one limitation of
DC, associated with what is referred to in ICT literature
as the digital divide [17]. This notion refers to disparity
of access to computer technologies, especially the
Internet. This concept is modeled on that of social
divide. Those on the "right" side have Internet access
through which to defend their rights and ideas, to
inform themselves, to communicate, and even to
increase their purchasing power (price comparators,
private sales sites at preferential rates, good deals,
etc.). Those on the "wrong" side have an extra disadvantage: they find themselves excluded from a new
dimension of society, which slips a little further away
from them each day. How can this acknowledged limitation be reconciled with the idea that ICT will be the
salvation of democracy?

IEEE TECHNOLOGY AND SOCIETY MAGAZINE

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JUNE 2019

IEEE Technology and Society Magazine - June 2019

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