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Genetic Information, Non-Discrimination, and Privacy Protections in Genetic Counseling Practice

  • Professional Issues
  • Published:
Journal of Genetic Counseling

Abstract

The passage of the Genetic Information Non Discrimination Act (GINA) was hailed as a pivotal achievement that was expected to calm the fears of both patients and research participants about the potential misuse of genetic information. However, 6 years later, patient and provider awareness of legal protections at both the federal and state level remains discouragingly low, thereby, limiting their potential effectiveness. The increasing demand for genetic testing will expand the number of individuals and families who could benefit from obtaining accurate information about the privacy and anti-discriminatory protections that GINA and other laws extend. In this paper we describe legal protections that are applicable to individuals seeking genetic counseling, review the literature on patient and provider fears of genetic discrimination and examine their awareness and understandings of existing laws, and summarize how genetic counselors currently discuss genetic discrimination. We then present three genetic counseling cases to illustrate issues of genetic discrimination and provide relevant information on applicable legal protections. Genetic counselors have an unprecedented opportunity, as well as the professional responsibility, to disseminate accurate knowledge about existing legal protections to their patients. They can strengthen their effectiveness in this role by achieving a greater knowledge of current protections including being able to identify specific steps that can help protect genetic information.

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Notes

  1. This article presents general information about the law in order to educate genetic counselors about legal protections regarding genetic discrimination. It is not legal advice. Professional legal advice should always be sought before any legal action is taken. Application of the law may vary across situations because it is dependent on individually specific circumstances and on the applicable state and federal law.

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Further Reading

  • Council for Responsible Genetics (CRG). State Laws on Genetic Privacy. http://www.councilforresponsiblegenetics.org/geneticprivacy/map_statelaw.html.

  • Equal Employment Opportunity Commission (EEOC) – Where individuals must file a complaint of employment discrimination.

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  • Cancer Legal Resource Center – Organization has a free national telephone assistance line where patients can ask questions about cancer and genetic-related legal issues.

  • National Human Genome Research Institute - https://www.genome.gov/10002328.

  • Patient Advocate Foundation – Organization offers assistance with insurance appeals as well as general resources for patients.

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Acknowledgments

The authors wish to thank Catherine Fine, MS, CGC for her helpful comments and suggestions in the preparation of this manuscript.

Ms. Roche is supported, in part, by the National Human Genome Research Institute of the National Institutes of Health, Grants Number P50HG004488 and U01HG006487 with additional support from the UNC Cancer Research Fund and the UNC Lineberger Comprehensive Cancer Center.

Ms. Prince is supported by the National Human Genome Research Institute of the National Institutes of Health, Grant Number P50HG004488.

Conflict of interest

Author Anya E. R. Prince declares no conflict of interest.

Author Myra I. Roche declares no conflict of interest.

Human and Animal Rights

No animal or human studies were carried out by the authors for this article.

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Authors and Affiliations

  1. Center for Genomics and Society, School of Medicine, University of North Carolina, Chapel Hill, NC, USA

    Anya E. R. Prince & Myra I. Roche

  2. Department of Pediatrics and Department of Genetics, School of Medicine, University of North Carolina, Chapel Hill, NC, USA

    Myra I. Roche

  3. University of North Carolina, CB# 7240, Room 326 A MacNider, Hall Chapel Hill, NC, 27599-7240, USA

    Myra I. Roche

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  1. Anya E. R. Prince
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Correspondence to Myra I. Roche.

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Prince, A.E.R., Roche, M.I. Genetic Information, Non-Discrimination, and Privacy Protections in Genetic Counseling Practice. J Genet Counsel 23, 891–902 (2014). https://doi.org/10.1007/s10897-014-9743-2

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