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The Ethical Challenges of Direct-to-Consumer Genetic Testing

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Abstract

Genetic testing is currently subject to little oversight, despite the significant ethical issues involved. Repeated recommendations for increased regulation of the genetic testing market have led to little progress in the policy arena. A 2005 Internet search identified 13 websites offering health-related genetic testing for direct purchase by the consumer. Further examination of these sites showed that overall, biotech companies are not providing enough information for consumers to make well-informed decisions; they are not consistently offering genetic counseling services; and some sites even offer tests with little evidence of clinical value. This article aims to raise company and consumer awareness about the ethical concerns surrounding the direct-to-consumer marketing of health-related genetic tests. It also suggests ways that biotech companies can bring their services to the public in an ethically responsible manner, without increased regulatory oversight.

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Acknowledgments

This work was supported in part by the UW NIEHS sponsored Center for Ecogenetics and Environmental Health, Grant #: NIEHS P30ES07033. The authors thank Carolyn Watts, Ph.D, Professor in the Department of Health Services at the University of Washington, M. Louise Damiano, Communication Skills Instructor at the Northeast Wisconsin Technical College, and anonymous reviewers for their assistance and comments on the manuscript.

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Authors and Affiliations

  1. Institute for Public Health Genetics, University of Washington School of Public Health and Community Medicine, Seattle, U.S.A.

    Cheryl Berg & Kelly Fryer-Edwards

  2. Department of Medical History and Ethics, University of Washington School of Medicine, Seattle, U.S.A.

    Kelly Fryer-Edwards

  3. Department of Medicine, Gastroenterology, University of Washington Medical Center, 1959 NE Pacific St., Box 356424, Seattle, WA, 98195-6424, U.S.A.

    Cheryl Berg

Authors
  1. Cheryl Berg
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  2. Kelly Fryer-Edwards
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Correspondence to Cheryl Berg.

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Submitted for the Special Issue on Ethical Issues in Biotechnology.

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Berg, C., Fryer-Edwards, K. The Ethical Challenges of Direct-to-Consumer Genetic Testing. J Bus Ethics 77, 17–31 (2008). https://doi.org/10.1007/s10551-006-9298-8

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  • DOI: https://doi.org/10.1007/s10551-006-9298-8

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