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01-12-2014 | Professional Issues

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

Authors: Anya E. R. Prince, Myra I. Roche

Published in: Journal of Genetic Counseling | Issue 6/2014

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.

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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Title: Genetic Information, Non-Discrimination, and Privacy Protections in Genetic Counseling Practice
Authors: Anya E. R. Prince
Myra I. Roche
Publication date: 01-12-2014
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 6/2014
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-014-9743-2

2024 ASCO Annual Meeting

Springer Medicine

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

Abstract

2024 ASCO Annual Meeting

Springer Medicine

Abstract

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