Heavy Doses of Personal DNA Data, With Few Side Effects

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*/Heavy Doses of DNA Data, With Few Side Effects/*

By JOHN TIERNEY

http://www.nytimes.com/2011/01/18/science/18tier.html

When companies tried selling consumers the results of personal DNA

tests, worried doctors and assorted health experts rushed to the

public's rescue. What if the risk assessments were inaccurate or

inconsistent? What if people misinterpreted the results and did

something foolish? What if they were traumatized by learning they were

at high risk for Alzheimer's or breast cancer or another disease?

The what-ifs prompted New York State to ban the direct sale of the tests

to consumers. Members of Congress denounced the tests as " snake oil, "

and the Food and Drug Administration has recently threatened the

companies with federal oversight. Members of a national advisory

commission concluded that personal DNA testing needed to be carefully

supervised by experts like themselves.

But now, thanks to new research, there's a less hypothetical question to

consider: What if the would-be guardians of the public underestimated

the demand for their supervisory services?

In two separate studies of genetic tests, researchers have found that

people are not exactly desperate to be protected from information about

their own bodies. Most people say they'll pay for genetic tests even if

the predictions are sometimes wrong, and most people don't seem to be

traumatized even when they receive bad news...

" The medical field has been paternalistic about these tests, " says

J. Neumann, the lead author of the study, who is director of the Center

for the Evaluation of Value and Risk in Health at Tufts Medical Center.

" We've been saying that we shouldn't give people this information

because it might be wrong or we might worry them or we can't do anything

about it. But people tell us they want the information enough to pay for

it. "

Why do experts differ from consumers on this issue? You could argue that

the experts are better informed, but you could also argue that some of

them are swayed by their own self-interest. Traditionally, people have

had to go through a doctor to get a test, which could mean paying a fee

to the physician as well as to a licensed genetic counselor...

The paternalists argue that it's still unclear how to interpret some of

these genetic tests --- and it is, of course. But if you ban these

tests, or effectively eliminate them for most people by imposing

expensive and time-consuming restrictions, how does that help the

public? When it comes to knowing their own genetic risks, most people

seem to prefer imperfect knowledge to perfect ignorance.

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