Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers

Abstract

Many research sponsors and genetic researchers agree that some medically relevant genetic findings should be offered to participants. The scarcity of research specific to returning genetic results related to psychiatric disorders hinders the ability to develop ethically justified and empirically informed guidelines for responsible return of results for these conditions. We surveyed 407 psychiatric genetics researchers from 39 countries to examine their perceptions of challenges to returning individual results and views about best practices for the process of offering and returning results. Most researchers believed that disclosure of results should be delayed if a patient-participant is experiencing significant psychiatric symptoms. Respondents felt that there is little research on the impact of returning results to participants with psychiatric disorders and agreed that return of psychiatric genetics results to patient-participants may lead to discrimination by insurance companies or other third parties. Almost half of researchers believed results should be returned through a participant's treating psychiatrist, but many felt that clinicians lack knowledge about how to manage genetic research results. Most researchers thought results should be disclosed by genetic counselors or medical geneticists and in person; however, almost half also supported disclosure via telemedicine. This is the first global survey to examine the perspectives of researchers with experience working with this patient population and with these conditions. Their perspectives can help inform the development of much-needed guidelines to promote responsible return of results related to psychiatric conditions to patients with psychiatric disorders.

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

“…However, despite these favourable views, others raised concerns about the uncertainty of the information being returned to participants [ 137 , 140 ], the potential impact on scientific progress [ 140 ], burden on researchers who cannot provide the necessary support [ 136 ] or lack of infrastructure and resources [ 143 ], and blurring lines between research and clinical care [ 136 , 140 ]. Others held concerns for participants’ privacy and confidentiality [ 128 , 137 ], discrimination from insurance companies and banks [ 143 ], their ability to retain control of their data [ 137 ] and ensuring informed consent [ 18 , 137 ]. In addition, researchers were worried about the potential for adverse psychological reactions from returning results, including worry [ 136 ], confusion [ 136 , 137 ], anxiety, guilt [ 137 ], and stigmatization [ 137 ].…”

“…Clinical research setting. Seventeen studies have investigated views of researchers on returning IRR [44,76,84,119,18,128,[133][134][135][136][137][138][139][140][141][142][143]. A study of 39 psychiatric genetic researchers from 17 countries indicated that the majority of participants were either not returning results at all or had returned results but were not doing so in a systematic way [137].…”

A practical checklist for return of results from genomic research in the European context

“…All stakeholders prioritised RoR that could lead to surveillance, prevention and/or treatment. Professionals raised concerns, including difficulties obtaining informed consent, lack of time and resources, possible overdiagnosis, clinical follow-up, and potential for psychological harm [10][11][12][13][14][15][16][17].…”

Return of results from genomic research: a practical tool

“…All stakeholders prioritised RoR that could lead to surveillance, prevention and/or treatment. Professionals raised concerns, including di culties obtaining informed consent, lack of time and resources, possible overdiagnosis, clinical follow-up, and potential for psychological harm [10][11][12][13][14][15][16][17].…”