Genes Sneakers, Part 2

This is part two of a two-part piece. Part one can be found here.

By KARL STEPHAN, Consulting Engineer, Texas State University, San Marcos

Well, now we have some new advanced scientific knowledge about our DNA that can be obtained for a cost that falls every year, and it promises to tell us all sorts of things about how long we might live and what we might die of.  From the consumer’s point of view, especially if you are a consumer with a genetic malady that could cost some health insurer millions, it makes sense to pass a law forbidding discrimination on the basis of genetic testing.  But to be entirely consistent, it seems to me, they shouldn’t have stopped there.  They should have rescinded all the variations in the price of all kinds of insurance based on things like whether you smoke, how safely you drive, or how old you are.

The reason they didn’t, is because imposing a completely uniform rate on everybody for a class of insurance without taking advantage of any of the data that allows companies to predict risk, is like blindfolding a man and then telling him to go find his car keys.  Maybe he’ll find them eventually by feeling every square inch of the house, but it will take him a lot longer than if you let him look.  And if private insurers can’t use additional information to predict risk, they will have to raise rates on almost everybody, because they have to deal with worst-case situations that they could avoid with more information. But what’s crazy for a private company is done all the time by government, and so what we’ve prohibited from coming in the front door — discrimination based on DNA testing — is very likely to sneak around and come in by the back door when even the government finds that ignoring DNA data is a very costly thing to do.  Hence the sneakers of the title (I had to work it in somewhere).

What’s the answer?  I don’t have one.  Not every ethical dilemma posed by a new technological development has an easy answer, or even a logical hard answer.  We as a society have spent billions of dollars developing the ability to decode our own genes.  We have let that particular genie (pardon the expression) out of the bottle, and like Pandora, many of us will not be able to resist the temptation to pay whatever the market will bear to find out what our genes bode for our future.  But very little of what genetic testing tells you is a certainty.  And even lives cut short or debilitated by genetic disease can be worth living—ask Stephen Hawking, who has a type of amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) and has been wheelchair-bound and almost paralyzed for many decades.  Yet he has won a dozen or more international prizes for his groundbreaking work in theoretical physics, has married twice, and has been portrayed on Broadway.  Hawking should thank God that genetic testing for ALS wasn’t available when his mother was pregnant.  England’s National Health Services might have saved a few bucks if Hawking had been aborted, but the world would have been much poorer as a result.

Sources:  The article “Panel:  Genetics needs ethics rules” by Lauran Neergaard appeared in the Oct. 14, 2012 edition of the Austin American-Statesman, p. A7.  I referred to articles in Wikipedia on Stephen Hawking and the Human Genome Project.

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