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

Fida K. Dankar, Marton Gergely, Bradley Malin, Radja Badji, Samar K. Dankar, Khaled Shuaib

Research output: Contribution to journalReview articlepeer-review

18 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)913-921
Number of pages9
JournalComputational and Structural Biotechnology Journal
Volume18
DOIs
Publication statusPublished - 2020

Keywords

  • Data privacy
  • Dynamic consent
  • Informed consent
  • Population genomics

ASJC Scopus subject areas

  • Biotechnology
  • Biophysics
  • Structural Biology
  • Biochemistry
  • Genetics
  • Computer Science Applications

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