|Pamela Fink at her home in Fairfield, Conn., on April 28, 2010. Fink says she was fired after she tested positive for a breast-cancer gene and had a double mastectomy as a preventative measure|
In 2010, Pamela Fink, an employee of a Connecticut energy company, made a new kind of discrimination claim: she charged that she had been fired because she carries genes that predispose her to cancer. Fink quickly became the public face for the cutting edge of civil rights: genetic discrimination.
The Genetic Information Nondiscrimination Act, which was passed out of concern for just such cases in the wake of huge advances in genetics testing, took effect in late 2009. GINA, as it is known, makes it illegal for employers to fire or refuse to hire workers based on their “genetic information” — including genetic tests and family history of disease. GINA doesn’t just apply to employers: health-insurance companies can be sued for using genetic information to set rates or even just for investigating people’s genes.
There have not been any landmark cases or huge jury awards yet under GINA, but genetic discrimination is real. According to the Equal Employment Opportunity Commission’s annual report, released last month, there were 245 genetic-discrimination complaints in fiscal year 2011, up more than 20% from a year earlier. At the same time, the EEOC reported that the “monetary benefits” it helped collect related to genetic discrimination — in damages, back pay and other penalties — jumped more than sixfold, from $80,000 to $500,000.
These numbers will almost certainly increase greatly in coming years. Many people still do not know about their rights under GINA or even what genetic discrimination is. There will also no doubt be more lawyers developing genetic-discrimination practices. But the main reason these claims are likely to rise is that, as biological science advances, there is likely to be even more genetic information available about people. Tests are getting better at identifying those who are predisposed to cancer, heart disease and Alzheimer’s disease. Even though this sort of medical information should remain private, employers and insurance companies will have strong financial incentives to get access to it — and to use it to avoid people who are most likely to get sick.
When genetic-discrimination claims start showing up in the courts in significant numbers, they are likely to get a sympathetic hearing. This is just the sort of civil right that there is the most support for. How much? When Congress enacted GINA in 2008, the House of Representatives supported it 414-1, and the Senate backed it unanimously.
There are two major reasons that so many people — even congressional Republicans who are highly skeptical of civil rights laws — like GINA. First, there is the kind of discrimination it is aimed at: penalizing people for strands of DNA and RNA that they inherited from their parents through no fault of their own. Discrimination law is a tricky thing: there are no hard-and-fast rules for deciding what characteristics of a person should be off-limits in deciding whether to hire them, rent them an apartment or set their insurance rates. In general, our society has decided to protect people for qualities that are “immutable” — that is, something about them that is impossible or, at least, very difficult to change.
So we make it illegal to discriminate on the basis of race, national origin, skin color and sex. (And religion: in that case, people can easily change faiths — we just don’t think they have to.) On the other hand, we generally do not protect people who are not hired because they lack a high school diploma or because they wear a beard. Our response to those people is that if you want the job you should get more education or shave. Genes are a classic immutable characteristic: outside of some complicated medical procedures, we’re pretty much stuck with the genes we were born with.
The second major reason genetic-discrimination laws are popular is that this is a kind of bias everyone feels they could be exposed to. If you are white, you may not think you will benefit from a law against racial discrimination, and if you are straight you probably do not worry about discrimination on the basis of sexual orientation. But none of us has perfect genes — and for the most part, we have no idea what is lurking in our DNA and RNA. Our genes are complex enough that we all have some negative information encoded in there — and none of us wants to lose a job or be denied insurance over it. When juries begin to hear these cases, they are far more likely to identify with the plaintiffs than with the companies that discriminate. That doesn’t mean that there won’t be plenty of companies looking to benefit from genetic information, but if they use it, they may well have to pay.
Cohen, the author of Nothing to Fear, teaches at Yale Law School. The views expressed are solely his own.
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