Re-examining the Ethics of Genetic Counselling in the Genomic Era
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ORIGINAL RESEARCH
Re-examining the Ethics of Genetic Counselling in the Genomic Era Will Schupmann
&
Leila Jamal & Benjamin E. Berkman
Received: 28 August 2019 / Accepted: 17 May 2020 # This is a U.S. Government work and not under copyright protection in the U.S.; foreign copyright protection may apply 2020
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. Keywords Genetic counselling . Nondirectiveness . Bioethics . Counselling techniques . Ethics . Professional development
Introduction Leila Jamal and Benjamin E. Berkman are co-senior authors W. Schupmann (*) Department of Bioethics, Clinical Center, National Institutes of Health, 10 Center Dr., Bldg. 10/Room 1C118, Bethesda, MD 20892, USA e-mail: [email protected] L. Jamal 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 e-mail: [email protected] B. E. Berkman 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 e-mail: [email protected]
Over the last several decades, genetic counsellors have played an increasingly integral role in healthcare, “helping people understand and adapt to the medical, psychological, and familial implications of the genetic contributions to disease” (Resta et al. 2006, 77). Their work has expanded beyond the paediatric and prenatal settings to nearly the entire medical field. With the arrival of genomic sequencing technology, which has increased the sophistication and usefulness of genetic analyses for the purposes of improving health, the work of genetic counsellors has only become more vital (Ormond 2013). As we enter the genomic era, however, the needs of patients are transforming and the exceptionality of genetic information is decreasing. The vast num
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