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Ethical issues in psychiatric genetics research: points to consider

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Abstract

Rationale

Psychiatric genetics research warrants ethical consideration because of the complex nature of conducting research among affected families. When researchers identify compelling reasons to offer susceptibility data to participants, they face challenges to identify an infrastructure to convey information and means to ensure that undue research risks are not encountered.

Objectives

To outline ethical issues in conducting research in psychiatric genetics with the aim of considering how the identification of susceptibility genes for psychiatric disorders may shape future research; to provide points to consider for conducting psychiatric genetics research with the anticipation of offering susceptibility data to participants.

Methods

Ethical issues that arise in psychiatric genetics research conducted with affected families are discussed along with reasons susceptibility data may be offered to participants in the future.

Results

We suggest that all researchers, even those who have no intention of offering susceptibility genetic results, consider how advances in knowledge might affect the provision of research findings.

Conclusions

Existing ethical issues are likely to become even more pressing as susceptibility genes are identified for major psychiatric disorders. It behooves researchers, mental health professionals, and geneticists to consider how to use our growing scientific knowledge to best help participants in ways that anticipate and prevent, rather than respond to, ethical conflicts.

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Acknowledgements

The authors wish to thank Ann Pulver, Ph.D., and Donald Rosenstein, M.D., for providing opportunities for us to deliberate and teach the ethics of psychiatric genetics research. We are also grateful to Sarah Gollust, Christine Riley, and Holly Gooding for their valuable comments on earlier drafts of this manuscript.

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Authors and Affiliations

  1. Medical Genetics Branch/National Human Genome Research Institute, National Institutes of Health, Building 10, Room 10C101, 10 Center Drive, MSC 1852, Bethesda, MD 20892-1852, USA

    Barbara Bowles Biesecker

  2. National Coalition for Health Professional Education in Genetics, 2360 West Joppa Road, Suite 320, Lutherville, MD 21093, USA

    Holly Landrum Peay

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  1. Barbara Bowles Biesecker
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  2. Holly Landrum Peay
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Correspondence to Barbara Bowles Biesecker.

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Biesecker, B.B., Peay, H.L. Ethical issues in psychiatric genetics research: points to consider. Psychopharmacology 171, 27–35 (2003). https://doi.org/10.1007/s00213-003-1502-2

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