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    Carrie A. Zabel, M.S., C.G.C.

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  • Nov. 1, 2008

    Genetic discrimination: Something to be frightened of?

    By Carrie A. Zabel, M.S., C.G.C.

6 comments posted

There are many things that might frighten you about genetics — the complexity of it, your psychological reaction to a genetic diagnosis, how to explain a result to your family members, and most often reported, the possibility of genetic discrimination.

Genetic discrimination refers to the possibility of an insurance company gaining access to your medical records or results of genetic testing and using this information to determine coverage or set premiums. To my knowledge, there has never actually been a case of genetic discrimination that has gone to trial, yet people continue to cite the possibility as a major reason they chose not to pursue genetic testing.

To help limit these concerns, the U.S. government signed the Genetic Information Non-Discrimination Act (GINA) into law in May 2008. This law:

  • Prohibits both group and individual health insurers from using a person's genetic information in determining eligibility or premiums
  • Prohibits an insurer from requesting or requiring that a person undergo a genetic test
  • Prohibits employers from using a person's genetic information in making employment decisions
  • Prohibits employers from requesting, requiring or purchasing genetic information about a person or their family members.

Unfortunately, GINA has some limitations. They include:

  • It doesn't prohibit medical underwriting based upon an individual's current health status.
  • It doesn't cover life, disability or long-term care insurance.
  • It doesn't apply to members of the military.

The health insurance provisions of GINA will take effect in May 2009, while the employment provisions will take effect six months later in November 2009. I want to hear your thoughts on this subject: Have you had an experience where you felt discriminated against based on your genetic information? Do you think GINA provides enough security for patients? How do you think insurers will handle the rapid integration of genetics in medicine — will this become more or less of a concern? Let's talk!

6 comments posted

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