Genetic discrimination vs. equality

Time magazine includes an essay in response to sending GINA (Genetic Information Nondiscrimination Bill) on to the President for his signature.

Sidenote: why hasn't he signed it yet? Perhaps he's setting up a good photo op akin to the carrier picture.

Anyway, Michael Kingsley thinks that discrimination on the basis of genetic information is no different from any other type of actuarial discrimination followed by the insurance companies. After all, they reject customers with other problems (diabetes, cancer, etc.), why not genetic information?

The bill tells employers and insurance companies that they may not use the results of genetic tests in choosing their employees and customers. One purpose of the bill is to encourage genetic testing. But the more important reason for it is to uphold a sense of fairness. Just as the law forbids discrimination against a person because she is black or a woman, it will henceforth forbid discrimination against her because she carries a gene that makes her more likely than average to get cancer. And the logic is similar: Why should she be punished for something completely beyond her control?

He doesn't discuss the job discrimination part of the bill.

What Kingsley misses, as do many, many other people, is that having a "genetic predisposition" for a condition does not mean you will get that condition. He's right, though, that actuarial analyses--which depend entirely on statistics and probabilities--indicate that a person with a genetic disposition for X is more likely to have that condition now or in the future, than one without that genetic predisposition.

I doubt, though, that the insurance companies will remember that BRCA1 and BRCA2, typically identified as the "breast cancer genes", are connected with only 5% of breast cancer occurrences. I'm sure they would look at positive results for these gene variants--meaning the person has the "wrong" genes--and deny insurance because a much larger percentage (perhaps as high as 80%) of women with those genes are likely to develop breast cancer. And, of course there's the added concern of ovarian cancer. So, if the insurance comapnies could, they would deny insurance and possibly dictate that all women be tested for BRCA1/BRCA2 before they are given health/life insurance.

Kingsley thinks insurance companies should be able to discriminate: 

The very appealing notion that genetic discrimination is unfair looks especially odd in the context of insurance. The idea of insurance is to protect against the unexpected or unlikely. Forbidding insurers to take predictable risks into account when choosing whom to insure and how much to charge is asking them to behave irrationally and make bets they are sure to lose. Not insuring people who are likely to get cancer, or charging them more, isn't evil. It's rational behavior.

Kingsley argues:

. . .your genes affect your life in many ways. To avoid all the controversy around the concept of "intelligence," let's consider a slightly different concept called "talent." Is it unfair that Yo-Yo Ma can play cello better than I can? Or that people hire Frank Gehry instead of me when they want a beautiful building, or that Warren Buffett is a better stock picker? Sure, it's unfair. And it's unfair in precisely the same way the results of a genetic test are: my lack of talent at playing the cello is something I was born with and beyond my control.

The question is usually put as one of nature vs. nurture. But there is not much difference between nature and nurture when it comes to fairness. Maybe your parents passed on great genes, or they passed on a few million dollars, or they were just terrific people who taught you the values of thrift and hard work. Even in the case of thrift and hard work, how much credit do you deserve for inheriting those fine values? How is it different from inheriting good genes? Answer: it's not much different.

Anyway, Kingsley's environment argument is crap (I don't use that kind of language normally, so you can tell I'm disturbed about it). Who know whether a potential Yo Yo Ma is in some black ghetto? Without the opportunity to express those genes, the genetic potential will never be seen.

. . .the skeptics who say this is a step on the way to universal health care actually understate the case. To truly apply the appealing principle that people should not be discriminated against because of their genes would be a leveling experiment, like something out of Stalinist Russia or China's Cultural Revolution.

Of course, there is no reason we have to follow an appealing principle off a cliff. We can have a bit of genetic justice without much risk of tumbling into Stalinism. The same politicians who voted last week to forbid genetic discrimination, because they apparently believe you should not gain any advantage or suffer any disadvantage as a result of the genes you inherit from your parents, have also voted to abolish the estate tax, because they apparently believe there should be no limit whatsoever on how much money you can inherit. Go figure.

How I wish his closing statement were true:

Nevertheless, the near total and uncontroversial agreement among Americans that genetic discrimination is wrong says something important about us: we may be a bit confused about all this, but we are a lot more radical about equality than we think.

One of the overall focuses of the current geneome analyses is to find differences. Then, connect those differences to other differences--such as race. We're not about equality, we're about "we vs. them".

What's your opinion?

Marie Godfrey, PhD

 

 

 

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