Psychiatric genomics researchers' perspectives on best practices for returning results to individual participants

Genet Med. 2020 Feb;22(2):345-352. doi: 10.1038/s41436-019-0642-7. Epub 2019 Sep 3.

Abstract

Purpose: Large-scale array-based and sequencing studies have advanced our understanding of the genetic architecture of psychiatric disorders, but also increased the potential to generate an exponentially larger amount of clinically relevant findings. As genomic testing becomes more widespread in psychiatry research, urgency grows to establish best practices for offering return of results (RoR) to individuals at risk or diagnosed with a psychiatric disorder.

Methods: We interviewed an international sample (n = 39) of psychiatric genetics researchers to examine conceptualizations of "best practices" for RoR to individual research participants.

Results: While the vast majority of researchers do not offer RoR, most believed medically actionable findings (85%) and clinically valid but non-medically actionable findings (54%) should be offered. Researchers identified three main areas for improvement: interfacing with individual participants; interdisciplinary training, guidance, and integration; and quality planning and resource allocation for returning results.

Conclusion: There are significant gaps between researchers' visions for "best" versus "actual" RoR practices. While researchers call for participant-centered practices, including consent practices that consider any special needs of participants with psychiatric disorders, return of individually meaningful results, and effective follow-up and provisions for treatment, the current reality is that consent and RoR practices lack standardized and evidence-based norms.

Keywords: ELSI; ethics; genetic; neuroethics; qualitative.

Publication types

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

MeSH terms

  • Adult
  • Female
  • Genetic Research / ethics*
  • Genetic Testing / ethics*
  • Genomics / methods
  • Humans
  • Incidental Findings
  • Male
  • Mental Disorders / genetics*
  • Psychiatry
  • Research Personnel / ethics
  • Research Personnel / psychology
  • Stakeholder Participation / psychology