A virtual deliberative public engagement study on heritable genome editing among South Africans: Study protocol

PLoS One. 2021 Aug 19;16(8):e0256097. doi: 10.1371/journal.pone.0256097. eCollection 2021.

Abstract

This article outlines the protocol for a prospective study for virtual deliberative public engagement on heritable genome editing in humans. The study intends to create a platform for a diverse group of 25-30 South Africans to engage with a facilitator and each other on 15 policy questions regarding heritable genome editing, with a focus on: a) the prevention of heritable genetic conditions; b) editing for immunity; and c) editing for enhancement. The aim is to understand the views on these issues so as to inform further research and policy, and to analyse the process and effect of deliberation on opinion. Participants will be expected to study the provided resource materials and pass the entrance exam-aligning with the protocols of the Harvard Personal Genome Project. In this way, the commitment, openness and basic knowledge of the candidates will be tested to ascertain whether they are suitable participants for the deliberative engagement.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Attitude / ethnology
  • Gene Editing / ethics*
  • Genome / ethics
  • Genome / genetics
  • Genomics / ethics*
  • Genomics / methods
  • Health Knowledge, Attitudes, Practice / ethnology*
  • Health Policy
  • Humans
  • Prospective Studies
  • Research Design
  • South Africa
  • Stakeholder Participation / psychology

Grants and funding

DT received the following grants: University of KwaZulu-Natal, African Health Research Flagship Grant <www.ukzn.ac.za>; National Research Foundation (South Africa), Grant 116275 <www.nrf.ac.za>. The funders had and will not have a role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.