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Am J Med Genet B Neuropsychiatr Genet. 2019 Dec;180(8):589-600. doi: 10.1002/ajmg.b.32682. Epub 2018 Oct 25.

Psychiatric genetics researchers' views on offering return of results to individual participants.

Author information

1
Center for Medical Ethics & Health Policy, Baylor College of Medicine, Houston, Texas.

Abstract

In the middle of growing consensus that genomics researchers should offer to return clinically valid, medically relevant, and medically actionable findings identified in the course of research, psychiatric genetics researchers face new challenges. As they uncover the genetic architecture of psychiatric disorders through genome-wide association studies and integrate whole genome and whole exome sequencing to their research, there is a pressing need for examining these researchers' views regarding the return of results (RoR) and the unique challenges for offering RoR from psychiatric genetics research. Based on qualitative interviews with 39 psychiatric genetics researchers from different countries operating at the forefront of their field, we provide an insider's view of researchers' practices regarding RoR and the most contentious issues in psychiatry researchers' decision-making around RoR, including what are the strongest ethical, scientific, and practical arguments for and against offering RoR from this research. Notably, findings suggest that psychiatric genetics researchers (85%) overwhelmingly favor offering RoR of at least some findings, but only 22% of researchers are returning results. Researchers identified a number of scientific and practical concerns about RoR, and about how to return results in a responsible way to patients diagnosed with a severe psychiatric disorder. Furthermore, findings help highlight areas for further discussion and resolution of conflicts in the practice of RoR in psychiatric genetics research. As the pace of discovery in psychiatric genetics continues to surge, resolution of these uncertainties gains greater urgency to avoid ethical pitfalls and to maximize the positive impact of RoR.

KEYWORDS:

attitudes; empirical; genetic; psychiatry; qualitative

PMID:
30358063
PMCID:
PMC6483893
[Available on 2020-12-01]
DOI:
10.1002/ajmg.b.32682

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