Perspectives of Sickle Cell Disease Stakeholders on Heritable Genome Editing

CRISPR J. 2019 Dec;2(6):441-449. doi: 10.1089/crispr.2019.0034. Epub 2019 Nov 19.

Abstract

Advances in CRISPR technology and the announcement of the first gene-edited babies have sparked a global dialogue about the future of heritable genome editing (HGE). There has been an international call for public input to inform a substantive debate about benefits and risks of HGE. This study investigates the views of the sickle cell disease (SCD) community. We utilized a mixed-methods approach to examine SCD stakeholders' views in the United States. We found SCD stakeholders hold a nuanced view of HGE. Assuming the technology is shown to be safe and effective, they are just as supportive of HGE as genetics professionals, but more supportive than the general public. However, they are also concerned about the potential implications of HGE, despite this support. As discourse surrounding HGE advances, it is crucial to engage disease communities and other key stakeholders whose lives could be altered by these interventions.

Publication types

  • Research Support, N.I.H., Intramural

MeSH terms

  • Adult
  • Anemia, Sickle Cell / genetics*
  • Anemia, Sickle Cell / therapy*
  • CRISPR-Cas Systems / genetics
  • Clustered Regularly Interspaced Short Palindromic Repeats / genetics
  • Female
  • Focus Groups
  • Gene Editing / ethics*
  • Gene Editing / methods
  • Genetic Therapy / ethics
  • Genetic Therapy / methods
  • Humans
  • Male
  • Middle Aged
  • Stakeholder Participation / psychology