Improved ethical guidance for the return of results from psychiatric genomics research

Mol Psychiatry. 2018 Jan;23(1):15-23. doi: 10.1038/mp.2017.228. Epub 2017 Nov 21.

Abstract

There is an emerging consensus that genomic researchers should, at a minimum, offer to return to individual participants clinically valid, medically important and medically actionable genomic findings (for example, pathogenic variants in BRCA1) identified in the course of research. However, this is not a common practice in psychiatric genetics research. Furthermore, psychiatry researchers often generate findings that do not meet all of these criteria, yet there may be ethically compelling arguments to offer selected results. Here, we review the return of results debate in genomics research and propose that, as for genomic studies of other medical conditions, psychiatric genomics researchers should offer findings that meet the minimum criteria stated above. Additionally, if resources allow, psychiatry researchers could consider offering to return pre-specified 'clinically valuable' findings even if not medically actionable-for instance, findings that help corroborate a psychiatric diagnosis, and findings that indicate important health risks. Similarly, we propose offering 'likely clinically valuable' findings, specifically, variants of uncertain significance potentially related to a participant's symptoms. The goal of this Perspective is to initiate a discussion that can help identify optimal ways of managing the return of results from psychiatric genomics research.

Publication types

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

MeSH terms

  • Ethics Committees, Research / standards*
  • Female
  • Genetic Predisposition to Disease
  • Genetic Research / ethics*
  • Genetic Variation
  • Genomics / ethics
  • Genomics / methods*
  • Guidelines as Topic*
  • Humans
  • Male
  • Mental Disorders / diagnosis
  • Mental Disorders / genetics*