Carpal Tunnel Syndrome and Genetic Ethics
August 9th, 2005
Francis S. Collins has written an op-ed article in the Sunday Seattle Times concerning the ethical implications of the Human Genome Project and genetic testing in everyday life. He discusses how genetic testing for predisposition toward a condition may affect your ability to get a job in a certain field or even to get health or life insurance. This can be a problem even if you do not have the condition to which you are found to be predisposed.
Particularly troubling for those concerned about Carpal Tunnel Syndrome:
But what about someone working on the railroad? A couple of years ago, the Burlington Northern Santa Fe Railway tested the genes of injured workers, without their permission, to try to detect a genetic predisposition to carpal tunnel syndrome. The railway, apparently, was looking for a way to avoid workman’s compensation claims by using an unproven genetic test. Only media coverage and action by the U.S. Equal Employment Opportunity Commission stifled those threats.
If it can happen on the railroad, genetic discrimination can happen anywhere. Many surveys have, in fact, documented public concern about this. For Americans to benefit from the Human Genome Project without fear, we need more secure protections.
Apparently the Human Genome Project may have revealed a gene for predisposition to Carpal Tunnel Syndrome. Fascinating.
Read more:
Exploring the Frontiers of Life [Google cache of the Seattle Times article]
Follow up resources:
Slashdot post by PersonalGenome
Compare and contrast…
Another Followup: Apparently this article is now being used in some way for a course at Valparaiso University in Indiana. Could someone share details with us? Thanks- The Eds.
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Entry Filed under: Pain + Injury
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11 Comments Add your own
1. Anonymous | August 10th, 2005 at 3:00 pm
Incoming Slashdot
2. Slashbot | August 10th, 2005 at 3:22 pm
Yeah.. We’re here. Interesting tidbit of information, though.
3. Hobnob | August 10th, 2005 at 4:07 pm
[Edited for language. He appeared to not like the post -KKS]
4. Chris TruLove | August 10th, 2005 at 4:45 pm
Completely expected. And damned if it isn’t logical. A hard pill for us to swallow, sure, but a reality nonetheless. Recently a heart disease medication was approved that targeted african americans because of a genetic disadvantage that the drug could help rectify… and that’s all well and good. Now if I point out that African descendants have recognizably less hearty hearts, due to the aforemention genetic irregularity… NOW we have a problem.
We are not the same. Saying we’re the same hurts EVERYONE, being squeamish about declaring… whatever, that Swedes have a increased liklihood of developing X… means that we ALL then suffer for the advances that might be realized if we figure out WHY Swedes get more X.
5. jangofett | August 10th, 2005 at 4:46 pm
thats not right to use genetics to discriminate…. ouch my wrists hurt typing this.
6. Lew Payne | August 10th, 2005 at 5:03 pm
Using *any* type of research to deny someone what the public in general can attain is wrong. If we started denying health care coverage to those who are pre-disposed to heart disease, cancer or other major illness, it would produce a world where only the healthy can attain quality medical attention. This might have the chilling effect of discouraging “unhealthy” couples from having “unhealthy” babies, as well as lowering our health care costs overall.
Discouraging others from perpetuating known problems, with the attendant costs to society in general, is wrong… it is not the American way. We should all share equally in the burdens of others, including homelessness and unemployment.
To do otherwise is to encourage “survival of the fittest” — and we all know that doing so is a crime against nature. Nature intended for the less-fit to be a burden upon the more fit… so as to thwart adaptation through evolution.
Personally, I feel slighted and discriminated against when they spend money researching sickle-cell anemia for the black community only, and don’t spend an equivalent amount of money researching it for other races and nationalities. It matters not that only blacks can catch the disease… we should still spend equal amounts of money in irrelevant areas in the name of “equality.” We all believe in equality, right? Well… selectively… that is. When faced with real-world examples, we quickly find how full of holes our notions and theories are.
Nature is nature… humans can’t change that. To go against nature in the name of equality is absurd. Specifically… to pretend all things are equal in situations where common sense dictates otherwise is simply pollyanna.
Want to control health care costs? Start denying GROUP coverage to smokers, alcoholics, the overweight and those who practice risky sexual behavior. I’m tired of funding their extraordinary health care costs. Maybe you should be, too.
7. goldwave | August 10th, 2005 at 5:18 pm
I’ve worked in the biotech/genetic sector for some time. It’s both thrilling and terrifying what the future holds for us all, and things could get much better or much worse; probably both. Regarding this particular issue - using genetic propensities to determine employability - seems inevitable and I think in the long run wise. Instead of leading to a bunch of people losing disability benefits, I think the real long-term result will be finding means to adapt equipment, work environments, hours, and other aspects of jobs to suit people better; and to help people find jobs best suited for them. Everyone tends to forget that we all pay a price for the expense of providing social benefits such as disability, and the costs involved in analyzing whether someone does or doesn’t belong on the disabled dole. Besides, do you think people really should do jobs that expose them to an inherent risk of injury? It’s easy to dismiss the value of preserving one’s health - until you lose it. People would be far better off knowing in advance what puts them at risk. In the long run, and with some wisdom and ethics applied, the ability to determine genetic propensities will enable everyone to live better, safer, longer lives.
8. kat | August 10th, 2005 at 8:20 pm
The trouble isn’t the gathering of genetic information. Personally, if I were more susceptible to heart disease, cancer, etc., I’d want to know so I could exercize more, vigilantly get examined by a doctor, etc., to help prevent myself from developing actual problems.
It’s people’s reactions to genetic information that’s the trouble. Should people with a disposition toward carpal tunnel syndrome be turned down for computing jobs, when ergonomic keyboards and wrist-support gloves are readily available? I suggest not; this would be overreacting, jumping at shadows. Should the company ignore this data? No, as people have already pointed out, willful ignorance is a Bad Idea. But is it reasonable to ask these people to pay for their own preventative gear, since they’re more likely to require it than other employees? Or conversely, should special keyboards and gloves be provided freely to susceptible employees and at a charge to others, in the intrests of cutting down on both equipment and injury-compensation costs?
Varying people’s health insurance costs based on their current status, like alcoholism or smoking, is an accepted practice. Basing it on genetic predispositions also makes statistical sense. But doing the latter doesn’t account for human free will: the ability to make lifestyle choices that reduces person’s chances of developing a problem, despite genetics. A really good health insurance pricing scheme could take such choices into account as well.
The problem isn’t the knowledge; it’s what we do once we have it. Acting wisely on this new information is good; it’s overreacting that causes problems.
9. Privacy Digest: Privacy N&hellip | August 10th, 2005 at 9:59 pm
Genetic Discrimination in the IT Workplace.
10. dennisInDallas | August 11th, 2005 at 8:53 am
Just another example of how tying healthcare to employment is such a heinous practice. But that’s our brave new world recreating itself as we speak.
11. anemia nutrition | October 17th, 2007 at 11:46 pm
I am afraid of what the future holds with genetic discrimination and such. I have bad anemia and I’m afraid of how this might affect my kids. Thanks for the post, I’m adding to my reader
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