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Keeping genetic information confidential


This article is part of a series that will bring the latest genetic developments from the National Human Genome Research Institute to practicing nurses.

Imagine that during a job interview, the hiring manager asks about your family’s history of hereditary colorectal cancer and asks you to have a genetic test to define your risk. Or imagine that a patient who carries a gene mutation predisposing her to ovarian cancer tells you that her daughter was denied health insurance because of her risk of ovarian cancer—even though she hasn’t been tested for the mutation.

If you think such actions by employers and healthcare insurers are illegal under federal law, you’re partially right. In May 2008, President Bush signed the Genetic Information Nondiscrimination Act (GINA), the first federal law protecting people from genetic discrimination. But the law just started to apply to health insurers in May 2009, and it won’t start applying to employers until November 2009. Until then, all we have is a complicated patchwork of state laws that vary widely in scope and effect.

Why people need protection

Without legal protection, Americans are vulnerable to discrimination based on their DNA. Employers can require a genetic test as a condition of employment. And health insurers can deny a person insurance—or set high premiums.

Even though clear-cut examples of genetic discrimination aren’t common, patients and clinicians cite the fear of discrimination as a major reason for not seeking genetic testing. In a 2007 study of 1,199 Americans, 86% expressed some or a lot of trust in their physicians having access to genetic test results. Only 24% expressed some or a lot of trust in insurers; only 16% expressed some or a lot of trust in employers. This fear has had a chilling effect on genetic testing and the full promise of genomics in health care.

What you should know

As a nurse, you should understand your patients’ concerns about insurer and employer discrimination based on family history and genetic test results. And you need to be ready to discuss the relevant legal protections against genetic discrimination before genetic testing. (See What GINA does and doesn’t do.)

For more information about GINA, visit the National Human Genome Research Institute’s website at http://www.genome.gov/10002328#6.

Selected references

Genetics and Public Policy Center. U.S. public opinion on uses of genetic information and genetic discrimination. 2007. www.dnapolicy.org/resources/GINAPublic_Opinion_Genetic_Information_Discrimination.pdf. Accessed June 26, 2008.

Hudson KL, Holohan MK, Collins FS. Keeping pace with the times—the Genetic Information Nondiscrimination Act of 2008. N Engl J Med. 2008;358:2661-2663. http://content.nejm.org/cgi/content/full/358/25/2661. Accessed June 26, 2008.

National Conference of State Legislatures. Genetics and health insurance state anti-discrimination laws. 2008. http://www.ncsl.org/programs/health/genetics/ndishlth.htm. Accessed June 26, 2008.

Visit www.AmericanNurseToday.com/journal for a complete list of selected references.

Dale Halsey Lea is a Health Educator in the Education and Community Involvement Branch and Genomics Healthcare Branch. Greg Feero is Chief of the Genomics Healthcare Branch. Jean F. Jenkins is a Senior Clinical Advisor to the Director. All work at the National Human Genome Research Institute, National Institutes of Health, in Bethesda, Maryland.

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