In the US, legislation prohibiting genetic discrimination — the Genetic Information Nondiscrimination Act (GINA) — was signed into law in May 2008. As a result of GINA, group and individual health insurers cannot use a person’s genetic information to:
- Set eligibility requirements
- Establish premium or contribution amounts
- Request a person undergo a genetic test
Employers cannot use a person’s genetic information to:
- Make decisions about hiring, firing, job assignments, or promotion
- Request, require, or purchase genetic information about an employee or family member
Limitations of GINA:
- Does not provide protection when a condition is already diagnosed or manifest
- Does not apply to life, disability, or long-term insurers
The following resources have information about the benefits and limitations of GINA legislation:
- Discussion guide from the National Coalition for Health Professional Education in Genetics for clinicians about GINA legislation.
- Fact Sheet from the Department of Health and Human Services for researchers and health care professionals regarding the overview and implications of GINA legislation.
- The Genetics and Public Policy Center helps policymakers, the press, and the public understand and respond to the challenges and opportunities of genetic medicine and its potential to transform global public health. The Genetics and Public Policy Center has an extensive “Facts, Questions, and Answers” section about the implications of GINA legislation for patients.
- Information above adapted from text found via the Genetics Primary Care Institute (GPCI).
