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What is GINA and could my genetic data make it hard for me to get insurance coverage?

Although confirmed cases of genetic discrimination are thankfully rare, the fear of discrimination by insurance companies is one of the main reasons people hesitate to pursue access to their genetic information. We want you to understand the laws that protect you, as well as their limitations.

With the May 2008 passage of the Genetic Information Nondiscrimination Act (GINA) Americans are protected against discrimination by their employers or insurance companies based on genetic information in most situations. GINA does not extend to genetic information-based discrimination in life, long-term care, or disability insurance providers. And until the law is tested in court it is difficult to know how far its protections will extend in practice.

Most states also have their own statutes prohibiting or at least limiting genetic discrimination. In California, for example, individual and group insurers are prohibited from requiring an individual to provide genetic information, from using genetic information to decide eligibility or risk status, and from disclosing such information without consent.

In addition to legal protections, many insurers, such as Aetna, are developing specific guidelines about the use of genetic information.

Genetic Information Nondiscrimination Act (GINA)

The Genetic Information Nondiscrimination Act, or GINA, is U.S. federal legislation that protects Americans from discrimination (in health insurance and employment decisions) on the basis of genetic information. GINA was signed into law on May 21, 2008. As a result, American insurance companies and health plans (including both group and individual insurers, as well as federally-regulated plans) will be prohibited from:

  • looking at your predictive genetic information or genetic services before you enroll;
  • "requesting or requiring" that you or your family members take a genetic test;
  • restricting enrollment based on genetic information;
  • changing your premiums based on genetic information.

GINA also prohibits U.S. employers (including employment agencies, labor organizations, and training programs) from:

  • discriminating against who they hire or how much they pay on the basis of genetic information;
  • "requesting or requiring" that you or your family members take a genetic test;
  • disclosing your genetic information in their possession except under specific and specially controlled circumstances.

For more information in GINA, visit: https://www.eeoc.gov/laws/types/genetic.cfm


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