The Genome Book
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November 5th, 2009
Genetic discrimination update: California
So the Genetic Information Nondiscrimination Act guards against most forms of genetic discrimination when it comes to your job or health insurance. But there were some other types of insurance that GINA didn’t touch – life, disability, and long-term care.
Regulating how personal genetic information is used in those areas is left up to the states. And trying to track what each state is doing is like herding those proverbial cats. State legislatures are usually considering multiple laws at once, and it can be hard to tell how a state’s laws regarding genetic discrimination may have changed.
The National Conference of State Legislatures made a valiant attempt to summarize each state’s position, and their online genetic laws list is the one that most people seek out. But it was last updated in early 2008 – an eternity in the genetics world.
And when it comes to California, it looks like things have definitely changed.
The NCSL list states that California “restricts discrimination based on genetic information” in all three areas of insurance – life, disability, and long-term care. That assertion still holds true when it comes to life and disability coverage.
But the long-term care protections mentioned by NCSL, which prevented long-term care providers from requiring genetic tests, were set to expire in early 2008. (You can see the old version of the state insurance code by clicking here and scrolling down to Section 10233.1) There’d been some talk about maintaining them – and none of it apparently went anywhere.
I checked recently, just out of curiousity, and found that the earlier section of legal code (10233.1) had been deleted from California’s lawbooks entirely . There are new or revised sections of the life and disability insurance code covering discriminatory practices and underwriting on the basis of genetic testing. The revised long-term care section now doesn’t appear to discuss genetic issues (if reading insurance code is your idea of good times, click here and scroll down to Part 2, Chapter 2.6).
We’re certainly not lawyers, and if anyone knows more information, please let us know. We discuss the basics of genetic privacy and policy in Chapter 8 of our book.
But from the looks of these changes, 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.
And just to be clear, we’re not trying to pick on NCSL. Keeping their list up to date would be a full time job. When I can, I’ll look at other states from time to time to see what’s changed.
Categories: Chapter 8: Your Genetic Privacy
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