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Re-examining the Ethics of Genetic Counselling in the Genomic Era

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Abstract

Respect for patient autonomy has served as the dominant ethical principle of genetic counselling, but as we move into a genomic era, it is time to actively re-examine the role that this principle plays in genetic counselling practice. In this paper, we argue that the field of genetic counselling should move away from its emphasis on patient autonomy and toward the incorporation of a more balanced set of principles that allows counsellors to offer clear guidance about how best to obtain or use genetic information. We begin with a brief history of how respect for patient autonomy gained such emphasis in the field and how it has taken on various manifestations over time, including the problematic concept of nondirectiveness. After acknowledging the field's preliminary move away from nondirectiveness, we turn to a series of arguments about why the continued dominance of patient autonomy has become untenable given the arrival of the genomic era. To conclude, we describe how a more complete set of bioethical principles can be adapted and used by genetic counsellors to strengthen their practice without undermining patient autonomy.

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Notes

  1. Jon Weil describes that a significant benefit of nondirectiveness to genetic counsellors is that it “contributes to a public stance” that genetic counseling supports “the autonomy of the individual as he or she struggles with difficult decisions that are often subject to influence from medical professionals, social norms, and public policy” (Weil et al. 2006, 85).

  2. This study has been criticized on methodological grounds, yet it remains evidence of how some in the field understood nondirectiveness.

  3. In fact, nondirectiveness may have exacerbated patient understandings of risk. One study found that the more neutral the counsellee perceived their counsellor to be, the higher the counsellee perceived their own risk, independent of the objective risk (Shiloh and Saxe 1989). The authors suggested that counsellees may interpret neutrality as “concealing” bad news.

  4. Many genetic counselling master’s programmes still teach the approach and continue to describe themselves as practicing nondirectively.

  5. This is partly a result of the practical limitations facing the profession, such as time available for counselling sessions.

  6. It is also true, however, that the dominance of respect for autonomy can be frustrating for counsellors, as it restricts them from having much latitude to disagree with patient decisions or dissuade them from pursuing certain tests.

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Acknowledgments

We thank Kelly E. Ormond and Sara Chandros Hull for their review of earlier drafts as well as the Department of Bioethics at the NIH Clinical Center.

Disclaimer

The views expressed are the authors' own. They do not represent the position or policy of the National Institutes of Health, U.S. Public Health Service, or the Department of Health and Human Services.

Funding

This research was supported by the Intramural Research Program of the National Institutes of Health.

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Author notes

  1. Leila Jamal and Benjamin E. Berkman are co-senior authors

Authors and Affiliations

  1. Department of Bioethics, Clinical Center, National Institutes of Health, 10 Center Dr., Bldg. 10/Room 1C118, Bethesda, MD, 20892, USA

    Will Schupmann

  2. Department of Bioethics, Clinical Center, National Institutes of Health; National Institute of Allergy and Infectious Diseases, NIH, 10 Center Dr., Bldg. 10/Room 1C118, Bethesda, MD, 20892, USA

    Leila Jamal

  3. Department of Bioethics, Clinical Center, National Institutes of Health; Bioethics Core, National Human Genome Research Institute, NIH, 10 Center Dr., Bldg. 10/Room 1C118, Bethesda, MD, 20892, USA

    Benjamin E. Berkman

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Correspondence to Will Schupmann.

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Will Schupmann, Leila Jamal, and Benjamin E. Berkman declare that they have no conflict of interest.

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Schupmann, W., Jamal, L. & Berkman, B.E. Re-examining the Ethics of Genetic Counselling in the Genomic Era. Bioethical Inquiry 17, 325–335 (2020). https://doi.org/10.1007/s11673-020-09983-w

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