Genetic Privacy and Long Term Care: What Happened in California?

Published on
November 26, 2009

A loophole in California law means that insurers could require you to take a genetic test to qualify for long-term care insurance – and potentially deny coverage based on the results.

That juicy story tip comes from my former San Jose Mercury News colleague April Lynch, co-author of The Genome Book: A Must-Have Guide to Your DNA for Maximum Health and projects editor for the genetic testing company Navigenics. She writes in her blog:

Californians no longer appear to have previous genetic protections in the area of long-term care coverage. The old law didn't guard against all forms of genetic bias when it came to long-term care. Still, it's disappointing that in the same year that GINA succeeded at the national level, California took a step backward.

GINA is the 2008 Genetic Information Nondiscrimination Act, which protects Americans against discrimination in health insurance and employment based on their genetic information. But states can make their own laws regulating genetic privacy in the areas of life, disability and long-term care insurance. For some reason, California lawmakers allowed regulations requiring genetic privacy in long-term care insurance to expire. Why?

There are similar loopholes in Kansas' genetic privacy laws, Lynch says.

If you're interested in pursuing this story and want more background information, check out the Personalized Medicine Coalition's website, the Genetic Alliance website, the CDC's genomics page and the genetic privacy website of the Electronic Privacy Information Center.

And a Happy Thanksgiving to you!