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

European Journal of Human Genetics volume 29, pages 231–240 (2021)Cite this article

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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.

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Fig. 1: Psychiatric genetic researchers’ perspectives on challenges to offering to return.
Fig. 2: Preferred professional and modality to return medically relevant genomic research.

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Acknowledgements

Research for this article was funded by the National Human Genome Research Institute (NHGRI) of the National Institutes of Health (NIH) Grant R00HG008689 (GL-M). The views expressed are those of the authors alone, and do not necessarily reflect views of NIH or Baylor College of Medicine.

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  1. Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA

    Gabriel Lázaro-Muñoz, Laura Torgerson, Hadley Stevens Smith & Stacey Pereira

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  1. Gabriel Lázaro-Muñoz
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Correspondence to Gabriel Lázaro-Muñoz.

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Lázaro-Muñoz, G., Torgerson, L., Smith, H.S. et al. Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers. Eur J Hum Genet 29, 231–240 (2021). https://doi.org/10.1038/s41431-020-00738-0

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