A lack of discrimination
Michael Kinsley is a smart man and a terrific writer. But I think he’s dead wrong about GINA when he writes:
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.
This is a non-sequitur. What’s unfair is when people are tested for diseases by their employers without their consent. What’s unfair is when soldiers are kicked to the curb by the military because their ailments are deemed pre-existing. And I think he’s wrong about insurance, too:
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. Of course, we outlaw a lot of behavior that would be rational if it weren’t against the law. But 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.
Then I will sing “L’Internationale” at the top of my lungs. This is another specious argument. Most people in this country are not subect to medical underwriting–they are already treated blindly by their insurers*. Michael Kinsley has Parkinson’s disease. Should he be denied health insurance or employment? I don’t think so. Maybe it would be rational, but would it be right?
The question comes down to this: What kind of society do we want to live in?
*Yes, I know, this excludes the 45 million without health insurance at all.
My view–and Bob Cook-Deegan’s–can now be found here.
I work as an Assistant Professor in the Duke University Institute for Genome Sciences & Policy (although this site and its content are my own).
In 2007 I became the fourth subject in Harvard geneticist George Church's Personal Genome Project. As the PGP moves forward, I am chronicling the dawn of personal genomics, that is, people obtaining their genomic information for whatever reason(s) and figuring out what to do with it. I am interested in the relevant technologies and especially the attendant privacy and other ethical/legal/social issues.
This blog may also discuss some of my non-genome interests or, to paraphrase Dwight Yoakam, "Guitars, Cadillacs, hillbilly music, etc etc."
The header image comes from the Liz Lerman Dance Exchange's multimedia performance piece, "Ferocious Beauty: Genome."
May 23rd, 2008 at 10:08 am
You didn’t make any reasonable arguments here, this is just ranting about “what is right.”
But I agree, and here’s why:
Employment: generally, most employment has little to do with the person. Let’s face it, given the training, resources, and morale, most people can do most jobs just fine. The problem is that people confuse probable with true.
Quick test: research shows that mutation X is strongly correlated with low intelligence. I am intelligent. I have mutation X. How smart am I?
Here’s the problem: how does society ever learn about intelligence? am I encouraged? trained? admitted to school? employed? will the guardian bureaucrats of society’s fine institutions be willing to risk their admission statistics and resources on me to learn how smart I could be?
Historically: NO.
Another example:
Many of my employees complain of condition X. I test their genes. The tests claim that the majority of the employees are:
…40% susceptible to that condition. I cast doubt on my employee’s testimonies because they were not genetically predisposed and thus am not liable.
…300% susceptible to that condition. I cast doubt on the claims environmental hazard claim because they were genetically predisposed and thus am not liable.
Further, health care, as it increasingly become preventive rather than interventive, is social infrastructure, not a private responsibility. The idea of “health insurance” is antiquated and increasingly nonsense outside fridge emergency treatment. However, if society is becoming more responsible for its health, then so too is the idea that anyone can create life irresponsibly —becoming irresponsible.
Sorry for the long comment. I’ll make this into a blog post for Think Gene.
May 23rd, 2008 at 12:34 pm
Perhaps I didn’t articulate my points as well as I could have, Andrew, but with all due respect, I would characterize what I wrote here as more than just “ranting.” Did you read my op-ed?
I take issue with Kinsley’s basic point that genetic discrimination does not require legal redress because, well, “life isn’t fair.” I’m saying that when someone is arbitrarily denied employment or insurance because of his/her genes, that is unjust. I would go further and say that if people are wary of genetic testing because they perceive they might be discriminated against, then a legislative solution like GINA, provided it doesn’t create an avalanche of frivolous litigation, is appropriate. 509 of 510 members of Congress seem to agree.
May 23rd, 2008 at 8:12 pm
Op-ed: my mistake, I didn’t see that link at the bottom of the post.
I will read it first and then respond.
May 24th, 2008 at 1:33 am
The op-ed says that GINA is good because the genomics industry is good, and GINA helps the genomics industry by assuaging consumer fears.
Kinsley is saying that precedent exists for testing, sorting, and selecting people by objective standards: a meritocracy. He says that genetic testing, in theory, is simply another possible objective standard.
Above, you say that’s unfair and site some fringe cases. I of course agree that your examples are unjust. Yet, I have yet to read a good argument why it is theoretically wrong if genetics is used as an objective standard to select people for services, employment, admission, etc. That good argument is not what you wrote.
(I know this is just a blog post; I’d love to read other work you’ve written or could recommend on the subject.)