Genetic Testing Hippa

Genetic testing provides is highly sensitive, personal genetic information that needs to be protected. This information includes information such as predisposition to certain diseases, which is information that health insurance companies and employers could potentially use to discriminate against individuals. Left unprotected, genetic information could be used to deny employment or health insurance. Fortunately, the Health Insurance Portability and Accountability Act of 1996 (HIPAA) guidelines and laws protect people against unauthorized use of genetic information.

Genetic Information and Employment

Concerns about genetic testing and privacy focus on two areas — employment and health insurance. Many employers already insist on medical exams as part of the job application process.

In theory, employers could screen applicants for genetic information, indicating an increased risk of disease. By “weeding out” certain genetic profiles, the business could potentially cut costs on its health care insurance fees.

Genetic Testing Information and Health Insurance

Health care insurers could also, in theory, use genetic testing against individuals by denying coverage or charging extra premiums to people whose genetic information indicates a risk of serious disease.

Because genetic information is shared amongst families, health insurers could also hypothetically use an individual’s genetic testing results to discriminate against family members who never underwent genetic testing.

HIPAA Laws and Guidelines

The above scenarios are frightening, but fortunately have yet to become problems in our society. HIPAA guidelines and laws help prevent the misuse of genetic information and guarantee individual rights to genetic privacy.

One of the most important aspects of HIPAA laws is that genetic information is protected if it meets the definition of “protected health information.” HIPAA laws consider genetic information resulting from genetic testing to be private health information. A biological sample, which is required for genetic testing, is not considered protected health information (as it provides no information without genetic testing). DNA samples that are anonymous and cannot be identified, such as those in medical research databanks, are not considered protected health information, either.

Under HIPAA guidelines, health care providers have an obligation to keep genetic testing results private. For instance, prenatal genetic testing may be paid for by a health care provider, but the provider has no right to access the results of the test.

HIPAA Compliance

HIPAA compliance amongst medical professionals helps prevent privacy violations. As with other types of protected health information, it is the duty and responsibility of medical professionals to safeguard genetic information.

HIPAA guidelines focus on medical privacy issues, and do not cover the use of genetic information for non-medical purposes such as genealogy. A lack of HIPAA laws in such areas does not, however, mean that your genetic information is unprotected.

Individual states have their own laws regarding genetic privacy in circumstances where HIPAA compliance is not required. In addition, companies that deal with genetic information often detail their privacy policies on their Web sites. It’s important to review how the company uses and safeguards your genetic information.

Additional federal law, such as the Genetic Information Nondiscrimination Act (GINA) of 2008, add to existing HIPAA laws and make it illegal for an employer or health insurance provider to discriminate against individuals based on genetic testing information.

The combinations of HIPAA laws, GINA, and HIPAA compliance amongst the medical community combine to protect your genetic information on multiple levels. While it’s important to ensure the privacy of your genetic testing, it’s also comforting to know that HIPAA laws and guidelines prevent misuse of what may well be your most intimate medical files.


Doriott, C. (2004). Genealogical computing. Retrieved November 21, 2008, from the Web site:

Mikel, J. (2008). Senate passes genetic antidiscrimination bill. Retrieved November 21, 2008, from the Scientific American Web site: