Genetic Testing Discrimination

Genetic discrimination is a hot topic as predictive genetic testing becomes standard medical practice. Concerns that genetic testing information could be used for employment or health insurance discrimination need to be addressed as genetic testing becomes more common.

Genetic testing is one of the fastest growing areas of medical science. Through predictive genetic testing, individuals can learn if they are at risk for multiple genetic diseases.

The key phrase here is “at risk.” Genetic testing can reveal a higher than normal risk of a disease, but cannot indicate with certainty that the disease will actually develop. Genetic discrimination issues arise when employers and health care providers equate a predisposition for disease with actually having the disease. Fortunately, federal law protects people against genetic discrimination.

Genetic Discrimination in Action

Imagine being turned down for a job because genetic testing indicated a future risk of developing cancer. Or being denied health insurance for your newborn child because you carry a genetic marker that increases the risk of a congenital metabolic disease. Both situations are examples of possible genetic discrimination.

Genetic discrimination occurs when someone is unfairly singled out from the general population based on their genetic information. Life insurance companies have, to some extent, always practiced genetic discrimination: Premiums can be affected by the insured’s family medical history. Use of genetic testing by health insurance companies could result in much more highly targeted genetic discrimination.

HIPAA and Genetic Discrimination Issues

Fortunately, both federal and state legislation exists addressing genetic discrimination issues.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) makes it clear that, under the law, a genetic predisposition for a disease is not considered an existing health problem. In other words, health insurance companies cannot treat a healthy individual with a genetic predisposition for a disease as if they actually had the condition.

The Genetic Information Nondiscrimination Act

April of 2008 saw the Genetic Information Nondiscrimination Act (GINA) signed into law. GINA prohibits discrimination based on genetic information by employers or health insurance providers.

There are some exceptions that apply to GINA. The law does not apply to life or disability insurance companies, only health care providers. As life and disability insurance premiums have always factored in family medical histories, this doesn’t really affect genetic discrimination issues. GINA also does not apply to members of the military.

GINA, HIPAA and State Genetic Discrimination Laws

HIPAA and GINA provide protection against genetic discrimination that may not be available at the level of state legislation. Some state legislation provides addition protection against genetic discrimination issues, other states provide considerably less.

When considered at the state level, GINA, HIPAA and other federal legislation concerning genetic discrimination provide a benchmark for genetic information protection. All states must honor the protection offered by GINA and HIPAA, even if no state genetic discrimination guidelines exist.

Genetic Discrimination and You

The benefits of genetic testing outweigh concerns about genetic discrimination thanks to HIPAA, GINA and other laws. Prior to GINA, individuals had to balance the medical benefits of genetic testing against genetic discrimination issues. Today, people can undergo genetic testing with peace of mind, knowing that they are protected from genetic discrimination under federal law.

Resources

Horn, D., and P. Berano (1998). Genetic discrimination: A primer. Retrieved November 24, 2008 from the Council for Responsible Genetics Web site: http://www.gene-watch.org/programs/privacy/BerInterview.html.

Mikel, J. (2008). Senate passes genetic antidiscrimination bill. Retrieved November 21, 2008, from the Scientific American Web site: http://www.sciam.com/article.cfm?id=senate-passes-genetic-ant