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  • Perspective
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Improved ethical guidance for the return of results from psychiatric genomics research

Molecular Psychiatry volume 23, pages 15–23 (2018)Cite this article

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Abstract

There is an emerging consensus that genomic researchers should, at a minimum, offer to return to individual participants clinically valid, medically important and medically actionable genomic findings (for example, pathogenic variants in BRCA1) identified in the course of research. However, this is not a common practice in psychiatric genetics research. Furthermore, psychiatry researchers often generate findings that do not meet all of these criteria, yet there may be ethically compelling arguments to offer selected results. Here, we review the return of results debate in genomics research and propose that, as for genomic studies of other medical conditions, psychiatric genomics researchers should offer findings that meet the minimum criteria stated above. Additionally, if resources allow, psychiatry researchers could consider offering to return pre-specified ‘clinically valuable’ findings even if not medically actionable—for instance, findings that help corroborate a psychiatric diagnosis, and findings that indicate important health risks. Similarly, we propose offering ‘likely clinically valuable’ findings, specifically, variants of uncertain significance potentially related to a participant’s symptoms. The goal of this Perspective is to initiate a discussion that can help identify optimal ways of managing the return of results from psychiatric genomics research.

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Acknowledgements

We acknowledge Maria D. Iglesias de Ussel, Eric T. Ward, Genna Finkel, Jonathan S. Berg and James P. Evans for helpful work and discussions about the topics addressed in this paper. We also thank the anonymous reviewers for their helpful observations. Research for this article was funded by the National Human Genome Research Institute (NHGRI) of the National Institutes of Health (NIH) Grant R00HG008689 (Lázaro-Muñoz, G).

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Authors and Affiliations

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

    G Lázaro-Muñoz

  2. Department of Genetics, University of North Carolina, Chapel Hill, NC, USA

    M S Farrell, J J Crowley & P F Sullivan

  3. Department of Psychiatry, University of North Carolina, Chapel Hill, NC, USA

    J J Crowley & P F Sullivan

  4. Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweeden

    J J Crowley

  5. Translational Neuroscience LLC, Conshohocken, PA, USA

    D M Filmyer, R A Shaughnessy & R C Josiassen

  6. Department of Psychiatry, Drexel University College of Medicine, Philadelphia, PA, USA

    R A Shaughnessy

  7. Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden

    P F Sullivan

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  1. G Lázaro-Muñoz
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Correspondence to G Lázaro-Muñoz.

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PF Sullivan reports the following potentially competing financial interests: Element Genomics (Scientific Advisory Board member, stock options), Lundbeck (advisory committee), Pfizer (Scientific Advisory Board member) and Roche (grant recipient, speaker reimbursement). The other authors declare no conflicts of interest.

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Lázaro-Muñoz, G., Farrell, M., Crowley, J. et al. Improved ethical guidance for the return of results from psychiatric genomics research. Mol Psychiatry 23, 15–23 (2018). https://doi.org/10.1038/mp.2017.228

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