The Genetic Information Non Discrimination Act of 2008

Little noted, but hopefully long remembered, the Congress passed and President Bush recently signed, the Genetic Information Non Discrimination Act of 2008. Given the ability now to quickly test the genetic makeup of each and every one of us—with or without permission—doing our best to make sure that the information thereby gained isn’t abused is a matter of some urgent concern.

Little has been reported about the contents of the bill. Now, a helpful article in the New England Journal of Medicine tells us what is included—and what isn’t. From the article:

What GINA does:

- Prohibits 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 such as hiring, firing, job assignments, or any other terms of employment
- Prohibits employers from requesting, requiring, or purchasing genetic information about persons or their family members...

What GINA does not do:

- Does not prevent health care providers from recommending genetic tests to their patients
- Does not mandate coverage for any particular test or treatment
- Does not prohibit medical underwriting based on current health status
- Does not cover life, disability, or long-term-care insurance
- Does not apply to members of the military

Yes, there will be litigation, which I abhor. (That might sound funny coming from a lawyer but there is a reason I don’t do that much anymore.) Alas, since we can’t count on the goodwill of men, the new law seems the best way to ensure that the intimate information that can now be obtained from—and thanks to the Internet made available to—all is not used as a weapon against those with some genetic propensity to an illness or disability. Since that undoubtedly includes every single one of us, this new law should help protect us all from being discriminated against because our genes are deemed not up to snuff.

Worry: The bill apparently says nothing about medical discrimination, i.e. imposing rationing or futile care treatment limitations based on likely medical outcomes as seen in the gene crystal ball.