Application of HIPAA Regulations to Genetic Information

The federal Health Insurance Portability and Accountability Act regulates how the medical industry---doctors, hospitals, insurers---shares or divulges medical information, and who they can share it with. Even though HIPAA didn't have specific provisions on genetic information, that information was always covered, like other medical data. The 2008 Genetic Information Nondiscrimination Act has added specific genetic-privacy requirements to HIPAA.

Genetic Information

• The Equal Employment Opportunity Commission says your genetic information includes information from your genetic tests and those of your family, as well as information about your family medical history which could be used to determine whether you're at an increased risk of getting a disease, disorder or condition.

HIPAA

• The Department of Health says HIPAA protects your genetic information, if it's maintained by a health provider or health plan covered by the act and if it's identifiable as yours; if the information is used without any identifying details, it's not covered. The healthcare industry is legally required to put safeguards in place to protect access to your information and to limit the use and disclosure of the information to the minimum necessary. If your doctor knows you have a genetic predisposition to breast cancer, for instance, he can't share this with other medical professionals unless they need that information to treat you.

Pre-existing Conditions

• The University of Miami says HIPAA specifically forbids genetic discrimination in health insurance, the first such provision in federal law. Under HIPAA, you can't be excluded from group coverage because of a genetic predisposition to certain diseases; HIPAA specifically states that if you haven't been diagnosed as having the disease, insurers can't claim such genetic information is a pre-existing condition.

GINA Laws

• The Genetic Information Nondiscrimination Act, according to aishealth.com, made several changes to HIPAA guidelines, including specifying that genetic information is protected under HIPAA. The act also provides added protection, forbidding businesses from making employment decisions---hiring, firing, promotion---on the basis of genetic information and forbidding them from searching for such information.

HIPAA Exemptions

• HIPAA does allow healthcare providers to disclose information under certain circumstances, for example, if another doctor or hospital needs the information for treatment. The University of Miama says HIPAA also doesn't protect information in your tissue samples: If someone wants to study your genes and the sample isn't identified as your tissue, it's legal to share the information.