Genetic Testing Insurance Issues
Insurance Discrimination is a major concern for many people considering pre-symptomatic testing for HD. There are several laws that protect against insurance discrimination.
First, all medical information is protected by HIPAA (Health Insurance Portability and Accountability Act of 1996). In general, HIPAA doesn’t allow group health insurance issuers to create any rule of eligibility for a person or his/her dependents that discriminates against that person based on any health factor. The term “health factor” includes genetic information.
Secondly, a law has been passed called GINA (Genetic Information Non-discrimination Act) which provides some security against employment and medical insurance discrimination. GINA does not yet cover life, disability, or long term care insurances which are often of some concern to people in families with HD. GINA protects against discrimination based on positive gene status in healthy individuals who are gene positive but do not have HD. Once a person actually has signs or symptoms of the disease the protection disappears. GINA doesn’t apply to the military and Indian reservations. See the NIH Fact Sheet on GINA for more detailed information about GINA.
Lastly, there are also California laws that provide some protection for those who are gene positive but do not yet have the diagnosis of HD.
- State of California: Laws and Regulations – California Health and Safety Code
- State of California: Department of Managed Health Care - Knox-Keene Health Care Service Plan Act of 1975 (PDF)
- California Insurance Code
Other resources if you choose to read more about these issues:
- Genetic discrimination and GINA
- Database of Federal and State laws/statutes related to genetics
- Genetic Home Reference-Overview of genetic discrimination
- National Institute of Health – Office of Legislative Policy and Analysis
- Council for Responsible Genetics – A non-profit, non-governmental organization that fosters public debate about the social, ethical and environmental implications of genetic technologies.
For more information, please visit our other Genetics Testing pages: