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Review
. 2020 Apr 2:18:913-921.
doi: 10.1016/j.csbj.2020.03.027. eCollection 2020.

Dynamic-informed consent: A potential solution for ethical dilemmas in population sequencing initiatives

Fida K Dankar  1 , Marton Gergely  1 , Bradley Malin  2   3   4 , Radja Badji  5 , Samar K Dankar  6 , Khaled Shuaib  1
Affiliations
Review

Dynamic-informed consent: A potential solution for ethical dilemmas in population sequencing initiatives

Fida K Dankar et al. Comput Struct Biotechnol J. .

Abstract

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.

Keywords: Data privacy; Dynamic consent; Informed consent; Population genomics.

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References

    1. Dubow T, Marjanovic S. Population-scale sequencing and the future of genomic medicine: Learning from past and present efforts. 2016. https://www.rand.org/pubs/research_reports/RR1520.html. Accessed 28 Oct 2019.
    1. Dankar F.K., Ptitsyn A., Dankar S.K. The development of large-scale de-identified biomedical databases in the age of genomics—principles and challenges. Human Genomics. 2018;12:19. doi: 10.1186/s40246-018-0147-5. https://link.springer.com/article/10.1186/s40246-018-0147-5 - DOI - DOI - PMC - PubMed
    1. The “All of Us” Research Program | NEJM. https://www.nejm.org/doi/full/10.1056/NEJMsr1809937. Accessed 12 Feb 2020. - DOI
    1. Dankar F.K., Gergely M., Dankar S.K. Informed consent in biomedical research. Computational and Structural Biotechnology Journal. 2019;17:463–474. doi: 10.1016/j.csbj.2019.03.010. - DOI - PMC - PubMed
    1. Vayena E., Blasimme A. Health research with big data: time for systemic oversight. J Law Med Ethics. 2018;46:119–129. - PMC - PubMed