I'm going to deviate a little from the planned topic for today. A bill I've mentioned before, the Genetic Information Nondiscrimination Act, has been in the news recently, and will hopefully pass within the next few weeks. I have a ton of respect for Congresswoman Slaughter (she represents Rochester, NY, where I went to college, and was a big supporter of RIT), the bills primary sponsor in the House, and she has real science bona fides, with a degree in microbiology and masters degree in Public Health, but how good is this bill?
I want to spend a little bit of time dissecting it (not parsing phrase-for-phrase, but rather pulling out important points), and trying to assess its potential impact. Most of the press this bill has received has been positive (if uncritical, but what do I expect from the mainstream media on science?), but I'm always uneasy when I see a very diverse group of people supporting something. If all of these people like it, how can it possibly be doing much of anything? At the same time, at least some health insurers are opposed, and that gives me some visceral, if not intellectual, confirmation that the bill on the right track.
The bill begins with five findings that motivate the bill and inform its purpose:
That's precisely what this bill proposes. First, the bill amends Employee Retirement Income Security Act of 1974 (29 U.S.C. 1182) to prevent requirements for genetic tests before enrollment and to prevent modifying the premiums in a group health plan because of information about a plan member or the family of a plan member. At the same time, it also ensures that a person isn't denied access to genetic tests because of this, that a health care provider can discuss or suggest genetic tests with a patient as part of their care, and that a doctor cannot force someone to take a genetic test. The bill proceeds to extend the same protections to both group insurance plans not affiliated with employment, with individual health plans, and to medicare supplemental coverage. Finally the bill places genetic information as protected health information under HIPAA.
The next section deals with employment discrimination. It prevents an employer from refusing to hire or firing an employee because of the results of a genetic test, and it prevents them from segregating employees based on genetic tests in such a way that is harmful to their employment opportunities. Moreover, an employer can't request, require, or purchase genetic information about an employee or a family member of an employee. There are a few exceptions to this, but they typically require informed consent from the employee and no individually identifying data being received by the employer. These regulations are similarly applied to employment agencies, labor unions, and training programs. The bill explicitly excludes discrimination based on genetic information as a cause of action for a federal civil rights case, but establishes a committee to meet in 6 years to reconsider that decision. Lastly, the bill says that medical information about an existing disease, even diseases with a genetic basis, is not considered genetic information.
After giving the bill a fairly thorough reading, I'm satisfied with it, it goes a very long way to preventing health insurance and employment discrimination because of genetic information. The specific penalties for employment discrimination are somewhat opaque to me, but the minimum damages for health insurance discrimination ($2,500 normally or $15,000 in some special cases) seem reasonable to me. I also like the fact that it explicitly defines some medical information as not genetic information even though that medical condition may have a genetic basis. A line is definitely needed to separate genetic and non genetic information, because without that, almost any trait or characteristic can be claimed to have a genetic underpinning. An employee with a bad attitude, who starts fights and is generally a pain in the ass, is someone you'd want to fire. But what if they claim that their attitude is genetically based (and there is certainly evidence that some factors that make up temperament are genetic)? Without that line, an argument could be made that the firing is based on genetic information and therefore illegal. I'm not suggesting that this scenario is likely, but I do think that by creating the distinction the bill prevent some potentially abusive claims.
So I think I've answered my own question. Despite (or maybe because of?) the wide array of people backing this bill, it does have a positive impact and really does accomplish something. The bill is a very good step forward, and hopefully will have the added side effect of recruiting subjects for genetic research a little easier. This next week I should be back to Monday/Thursday blogging; there aren't any deadlines looming to trip me up. On Monday I'll talk about the Secretary’s Advisory Committee on Genetics, Health, and Society draft report Realizing the Promise of Pharmacogenomics: Opportunities and Challenges
Reagan Kelly is a PhD student at University of Michigan studying bioinformatics. His thesis is focused on risk prediction algorithms for personalized medicine systems, and he is also interested in the policy and societal implications of individualized healthcare.You can read his CV for more information about him. If you would like to contact him, please send an email to reagank -at- reagank.com