About 1990, I was a member of something called the Task Force on Genetic Testing at the then Health Insurance Association of America (HIAA). The health insurance industry realized that, with the Human Genome Project in its early stages, we weren’t far away from genetics being a part of everyday health care and the Orwellian implications on us as insurance underwriters were not lost.
The task was to think about all of this and develop an industry policy for dealing with it. Here’s the headline: In 1990, there was no disagreement among the many insurance executives on the panel that it should never be the insurance industry’s policy to use genetic information to underwrite or otherwise use the information in a way that disadvantaged the people we either insured or could insure.
So, 18 years later, the news that the Senate has passed a genetic non-discrimination bill by a unanimous vote and we are a week or two from the House approving, and the President signing, a bill to outlaw the use of genetic information for the purpose of underwriting was notable. The bill would also prohibit an insurer from forcing someone to take a genetic test
and using that information to limit their coverage and it would
prohibit an employer from using the information in the workplace.
In fact, to my knowledge, in these 18 years there has not been an example of a health insurance insurance plan using genetic information for any of these things.
The good news is that we are about to have a bill prohibiting the use of genetic testing for insurance or employment discrimination so no one can ever use it for these purposes.
The bad news is it took 18 years to do something that was obvious and the insurance industry
never objected to in principal. There were tangential disagreements
about how such a law could create a new protected class and therefore
increase the number of law suits in the workplace.
The implication for health care reform is that if it takes 18 years to do the easy things you can understand why it is taking so long to do the hard things.
I hope the bill takes Electronic Health Records exchange into consideration. I work with the Health Information Security and Privacy Collaboration (HISPC), funded by the Agency for Health Care Research and Quality — one of the barriers to EHR adoption by physicians is misunderstanding how laws such as this one which protect genetic information privacy can interfere with exchanging health information electronically, if they are not structured with that in mind.