Genetic Health Privacy

Would you undergo a genetic DNA test that might save your life if it meant losing your job?

With the growing recognition and popularity of genetic testing as a way to stave off disease, new worries have sprung up about the possibility of employers and insurance companies using genetic profiling as a discriminatory tool.

The Importance of Health Information Privacy

Say for example, that both your mother and grandmother had breast cancer. With genetic testing, you can find out just how likely it is that you also will be diagnosed with the disease.

Patient advocacy groups worry that, just as a preexisting medical condition may disqualify you from obtaining healthcare, genetic test results in the wrong hands could be used to deny medical coverage.

In addition, there is a growing concern that if employers can view genetic test results, it may result in discriminatory hiring practices.

Personalized Medicine Used Against You

Genetic testing is the analysis of genes, chromosomes, and proteins. It is used to predict the risk of disease, identify carriers of disease, diagnose disease, or determine the likely course of a disease.

More than 900 genetic tests are available for many different diseases, including breast, ovarian, colon and some rare cancers. There also is a strong detectable genetic marker for early onset Alzheimer’s disease.

It is easy to see what employers could gain by vetting employees and potential hires based on their genetic tests.

Workers also are aware of what’s at stake. A poll taken in 2000 by National Center for Genome Resources, a research group, found that 63 percent of workers would not take genetic tests if employers could get access to the results.

Privacy DNA and the Fourth Amendment

Groups concerned about discrimination based on genetic testing often cite the fourth amendment to the constitution, which in part guarantees a “reasonable expectation of privacy.”

However, that amendment clearly guarantees privacy for individuals only from an intrusive federal government, not private corporations. Recent legislation, however, has provided health privacy advocates with a law of their own to fall back on.

President Inks DNA Privacy Act

On May 21, 2008, Former President George W. Bush signed The Genetic Information Nondiscrimination Act (GINA) protecting Americans against discrimination based on their genetic information when it comes to health insurance and employment.

After thirteen years of Congressional debate, the bill passed the Senate unanimously and the House by a 414 to 1 vote. The lone dissenter was former presidential candidate, Rep. Ron Paul, who called it “intrusive federal legislation.”

Under GINA, employers’ decisions about hiring, firing, and promotion, as well as insurance companies’ decisions about subscriber eligibility and premiums could not rest on genetic information.

GINA does not compel health insurers to take on people who possess preexisting medical conditions.

Health Insurers Disagree

While the act is a victory for those concerned by privacy issues with health records, insurers claim that patients can use genetic testing against them.

For example, someone who knows they have a good chance of early onset of Alzheimer’s disease could load up on long-term care insurance. Insurers, however, did not lobby against the bill.

The bill’s ease of passage may have been helped by technology giant IBM, which three years before the bill’s signing, publicly promised not to use genetic information in hiring or eligibility for its heath care benefits.

The company, which has a business stake in promoting genetic data gathering and processing, made the announcement precisely as congressional debate on the act was heating up. IBM employs approximately 400,000 people worldwide.

Resources

American Society of Clinical Oncology Staff. (n.d.). Genetic testing. Retrieved September 19, 2008, from the American Society of Clinical Oncology Web site: www.asco.org/patient/Learning About Cancer/Genetics/Genetic Testing.

Colb, S. (2008). What’s so special about genetic discrimination? Congress passes a revealing bill. Retrieved September 19, 2008, from the FindLaw Web site: writ.news.findlaw.com/colb/20080514.html.

Godfrey, M. (n.d.). Ways to protect people from discrimination based on genetic information. Retrieved September 19, 2008, from the Gene Forum Web site: www.geneforum.org/node/538.

IBM Staff. (n.d.) About IBM. Retrieved September 22, 2009, from the IBM Web site: http://www.ibm.com/ibm/us/en/.

Lohr, S. (2005). I.B.M. to put genetic data of workers off limits. Retrieved September 19, 2008, from the New York Times Web site: http://www.nytimes.com/2005/10/10/business/10gene.html?_r=2