TY - JOUR
T1 - Dynamic-informed consent
T2 - A potential solution for ethical dilemmas in population sequencing initiatives
AU - Dankar, Fida K.
AU - Gergely, Marton
AU - Malin, Bradley
AU - Badji, Radja
AU - Dankar, Samar K.
AU - Shuaib, Khaled
N1 - Publisher Copyright:
© 2020 The Authors
PY - 2020
Y1 - 2020
N2 - While the majority of population-level genome sequencing initiatives claim to follow the principles of informed consent, the requirements for informed consent have not been-well defined in this context. In fact, the implementation of informed consent differs greatly across these initiatives - spanning broad consent, blanket consent, and tiered consent among others. As such, this calls for an investigation into the requirements for consent to be “informed” in the context of population genomics. One particular strategy that claims to be fully informed and to continuously engage participants is called “dynamic consent”. Dynamic consent is based on a personalised communication platform that aims to facilitate the consent process. It is oriented to support continuous two-way communication between researchers and participants. In this paper, we analyze the requirements of informed consent in the context of population genomics, review various current implementations of dynamic consent, assess whether they fulfill the requirement of informed consent, and, in turn, enable participants to make autonomous and informed choices on whether or not to participate in research projects.
AB - While the majority of population-level genome sequencing initiatives claim to follow the principles of informed consent, the requirements for informed consent have not been-well defined in this context. In fact, the implementation of informed consent differs greatly across these initiatives - spanning broad consent, blanket consent, and tiered consent among others. As such, this calls for an investigation into the requirements for consent to be “informed” in the context of population genomics. One particular strategy that claims to be fully informed and to continuously engage participants is called “dynamic consent”. Dynamic consent is based on a personalised communication platform that aims to facilitate the consent process. It is oriented to support continuous two-way communication between researchers and participants. In this paper, we analyze the requirements of informed consent in the context of population genomics, review various current implementations of dynamic consent, assess whether they fulfill the requirement of informed consent, and, in turn, enable participants to make autonomous and informed choices on whether or not to participate in research projects.
KW - Data privacy
KW - Dynamic consent
KW - Informed consent
KW - Population genomics
UR - http://www.scopus.com/inward/record.url?scp=85083420206&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85083420206&partnerID=8YFLogxK
U2 - 10.1016/j.csbj.2020.03.027
DO - 10.1016/j.csbj.2020.03.027
M3 - Review article
AN - SCOPUS:85083420206
SN - 2001-0370
VL - 18
SP - 913
EP - 921
JO - Computational and Structural Biotechnology Journal
JF - Computational and Structural Biotechnology Journal
ER -