Damn, GINA!
For those of you that don’t know, I’m more than a little interested in legal issues facing cancer patients and survivors. In fact, you might say I have a vested interest in the subject. Last month, I gave an informal lecture (to a whopping three people) at Gilda’s Club on the Genetic Information Nondiscrimination Act (GINA).
The newly-enacted law makes it illegal for health insurers to raise your premiums based on genetic information, or to treat that info as a preexisting condition. It also makes people with less-than-desirable genes into a protected class. This means you can’t be discriminated against by your employer for having those genes, just like you can’t be discriminated against for being female, or African-American or Gay.
In terms of practical application, the law is intended to cover folks who test positive for genes associated with a particular disorder. For example, if my hypothetical sister gets a test that says she has the BRCA1 or BRCA2 gene, and therefore has “potential cancer” in her hypothetical breasts but is otherwise healthy, insurers and employers are prohibited from giving her the hypothetical boot. In fact, most employers are not allowed to ask for genetic info without jumping through a series of flaming legal hoops (although I predict that they’ll find ways around this pretty quickly – call me crazy).
It’s not really as impressive as it sounds, for several reasons. First and foremost, the law hasn’t taken effect quite yet. Insurers who know this is coming can jack up your rates based on your genetic info until May. Employers can still discriminate on the basis of genetic info until November. (So get that discrimination in while you still can, am I right?)
Second, for the people I am most concerned with – the already-diagnosed – the law basically does diddly/squat. If you have already been diagnosed with, say, breast cancer, insurance companies can (and will) still fuck with you. (You’re still protected from your employer because of the ADA and similar state statutes, but I digress.)
However, there’s some good stuff here, too. For example, if everyone in your immediate family is diagnosed with cancer, your insurer/employer can’t act against you. Believe it or not, that’s a new thing. As it stands now, if an employer perceives you as a risk to the company because of the potential that you’ll get cancer, they probably can fire you. (Unless the employer is self-insured, which might get you an ERISA claim. But I’m not touching that with a thousand-foot pole.)
The biggest nightmare I foresee with this thing is basically a technological one. As science starts to discover genes that, like BRCA1 and BRCA2 are more than just one-trick ponies, the line between genetic info and manifestation of a disease will likely become less clear. Scientists already know that the presence of BRCA1 & 2 both indicate a higher risk of ovarian and other cancers. So let’s say a woman is diagnosed with breast cancer, has a genetic test, and tests positive for BRCA1. Does she then have a cause of action against an insurer who might be inclined to charge her a higher rate? Couldn’t she argue that the insurer based the rate in part on her manifestation of breast cancer, but also in part on her increased risk for ovarian cancer? I think the answer is likely “yes.” It’s also likely that hapless insurance reps, when asked that very question in a deposition, would also answer “yes.” At least for the first year of two after GINA goes into effect.
That’s just the tip of the malignant mass, though. What if someone has a damaged TP53 gene? This basically makes the carrier into a cancer time-bomb by turning off the stuff that fixes your DNA and suppresses tumor growth. Is this going to be treated as a “manifestation” of Li-Fraumeni syndrome, or taken for what it is: a genetic disorder which manifests itself in various ways at various times?
I should confess that I have not read any of GINA’s proposed regulations and, of course, there is no case law yet. However, I don’t see how federal regs are going to be able to keep pace with genetics, or how judicial precedent is going to be meaningful at all in this context. It’s easier with sex, race, and religion; we know what those categories basically mean. But the law is notorious for its enormous following distance behind science.
