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

23 J. OF GENETIC COUNSELING 891 (2014) (with Myra Roche)

Posted: 6 Nov 2017 Last revised: 10 Nov 2017

See all articles by Anya Prince

Anya Prince

University of Iowa College of Law

Date Written: January 2, 2014

Abstract

The passage of the Genetic Information Nondiscrimination 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.

Suggested Citation

Prince, Anya, Genetic Information, Non-Discrimination, and Privacy Protections in Genetic Counseling Practice (January 2, 2014). 23 J. OF GENETIC COUNSELING 891 (2014) (with Myra Roche), Available at SSRN: https://ssrn.com/abstract=3064238

Anya Prince (Contact Author)

University of Iowa College of Law ( email )

Melrose and Byington
Iowa City, IA 52242
United States

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