Return of results in a global survey of psychiatric genetics researchers: practices, attitudes, and knowledge

Abstract

Purpose: Patient-participants in psychiatric genetics research may be at an increased risk for negative psychosocial impacts related to the return of genetic research results. Examining psychiatric genetics researchers' return of results practices and perspectives can aid the development of empirically informed and ethically sound guidelines.

Methods: A survey of 407 psychiatric genetics researchers from 39 countries was conducted to examine current return of results practices, attitudes, and knowledge.

Results: Most respondents (61%) reported that their studies generated medically relevant genomic findings. Although 24% have returned results to individual participants, 52% of those involved in decisions about return of results plan to return or continue to return results. Respondents supported offering "medically actionable" results related to psychiatric disorders (82%), and the majority agreed non-medically actionable risks for Huntington (71%) and Alzheimer disease (64%) should be offered. About half (49%) of respondents supported offering reliable polygenic risk scores for psychiatric conditions. Despite plans to return, only 14% of researchers agreed there are adequate guidelines for returning results, and 59% rated their knowledge about how to manage the process for returning results as poor.

Conclusion: Psychiatric genetics researchers support returning a wide range of results to patient-participants, but they lack adequate knowledge and guidelines.

Keywords: ELSI; ethics; feedback; genomics; return.

Figure 1.. Psychiatric genetics researchers supported offering a variety of potential findings to participants.

Each type of result was asked on a 5-point Likert scale anchored by “Strongly Disagree” to “Strongly Agree” with “Neither Agree nor Disagree” as the neutral midpoint.