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Genetic Testing: People Aren't Fazed By DNA Test Results, It Turns Out

MALCOLM RITTER   01/12/11 05:19 PM ET   AP

Genetic Testing

NEW YORK — Consumers who get their DNA tested for health risks take the results in stride, says the first major study of how people react to commercial genetic testing.

But getting that assessment for a bunch of diseases didn't inspire customers to eat better or exercise more, the researchers found.

Companies have offered "direct-to-consumer" genetic testing for several years, taking saliva samples from customers, analyzing the DNA and delivering a risk report for a series of diseases.

Critics say the results can be inaccurate, that DNA currently tells too little about an individual's disease risk to be useful, and that the information might make people unduly anxious.

The new study surveyed the reactions of about 2,000 customers about five months after they got the test results. It didn't assess the accuracy of the commercial test used.

The DNA test covered 22 conditions including Alzheimer's disease, diabetes, glaucoma, obesity and lung, breast and prostate cancers.

Participants showed no sign of significant anxiety from the results, which senior author Dr. Eric Topol found "very reassuring." The paper was published online Wednesday by the New England Journal of Medicine.

"We don't give consumers enough credit for the fact they can handle this type of information load about themselves," said Topol, director of the Scripps Translational Science Institute in La Jolla, Calif.

But neither did they cut down on fat in their diets – a common recommendation for several of the conditions tested for – or boost their exercise.

"That was very disappointing," Topol said. "Our conclusion is it's very hard to change behavior."

That might change in the future, when more DNA research will allow companies to identify people at sharply higher risk than they can indicate now, he said.

Researchers also asked the participants about getting follow-up medical tests for conditions highlighted by their DNA reports. Overall, there was no statistically meaningful indication that the DNA results had made participants get medical tests. But Topol said there was a hint of such an effect, most clearly for glaucoma and prostate cancer.

Only about half the participants said they'd seek medical testing in the future because of their DNA results. But the results indicated that being found at risk for some illnesses, including colon and breast cancer, encouraged people to say they wanted to get tested for them someday.

Topol called that result striking, although he noted, "We just don't know whether they're going to go through with it."

The study was financed by the federal government and by Scripps Health, a private health care organization. Because of stipends provided by the researchers, study participants on average paid less $250 for the Navigenics Inc., test, which cost $2,500.

Experts unconnected with the work praised the study.

"They've made an important contribution here," said Dr. Robert C. Green of Boston University, who studies how people react to their genetic risks.

Green said the new work addresses some contentious questions about DNA testing. It shows that on average there was no increase in anxiety, for example, and no costly, mass stampede to get medical testing by people with only a modest increase in disease risk.

While it doesn't rule out the idea that DNA tests can motivate people to change their lifestyle, it provides important data on that as well, he said.

The researchers said the sample doesn't reflect the general population, but rather those who order DNA tests from companies. They are likely to have higher levels of education and socio-economic standing than the general population and be focused on improving their health, Green said.

Dr. Muin Khoury, director of the Office of Public Health Genomics at the federal Centers for Disease Control and Prevention, said the work is "the first of many, many studies to come. It's the kind of study you need to do. I'm glad they did it."

___

Online:

http://www.nejm.org

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NEW YORK — Consumers who get their DNA tested for health risks take the results in stride, says the first major study of how people react to commercial genetic testing. But getting that assessm...
NEW YORK — Consumers who get their DNA tested for health risks take the results in stride, says the first major study of how people react to commercial genetic testing. But getting that assessm...
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Bigtuna1125
01:01 AM on 01/15/2011
Well right of the bat some things they test for are mildly pointless. Only in 10% of the cases of Alzheimer's disease and Parkinson's for that matter have a genetic basis. If you do test positive for those though you are going to get it. Some things it's just better not to know.
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afgail
Wise and strong.
02:34 AM on 01/14/2011
I guess I'm the exception. I had my DNA tested and have increased my exercise and altered the proportions of fat, protein and carbohydrates as suggested. Feeling better. Don't know if it is the placebo effect and I don't care. Spirits up and enjoying life.
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flowereater
Occupied.
06:03 PM on 01/13/2011
Aww. Too bad for the company who paid for the study. Guess they won't be hopping on the same band wagon as the companies who have made it commonplace for job applicants to take a drug test, chipping away at more of our privacy rights and leading us peasants into a fascist state more and more every day.
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Tulka2
Solidarity. Courage. Humor.
05:24 PM on 01/13/2011
This is a misleading slant on DNA testing.  No one is worried how people will react.  People are rightly concerned how their insurance provider will react.   Not a mention of that here.  Until we have some kind of guarantee we will get health coverage no matter what the results, people have very good reason to be concerned results will become public and their health will be put out on the curb by insurance companies. 

Or... as i suspect... the plan by private insurance is to sift out anyone with real problems by encouraging this kind of test and then putting all the really sick people in a public pool for taxpayers to handle. 

We better start tinkering with this new health care system sooner than latter to make the insurance companies forswear ever using such tests to deny coverage.  Or... single payer.  One or the other.
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flowereater
Occupied.
06:04 PM on 01/13/2011
Single f'n payer. You'll never get the insurance companies to forswear anything that could save them money.
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onionboy
Blessed are the Cheese Makers
12:03 PM on 01/13/2011
Maybe people were actually interpreting the results correctly, and that's why they weren't concerned. What's that, I'm positive for SNP-41b? That means I have a 3x greater chance of contracting Cookaburra Disease? So, instead of a 0.3% chance, I have a 1% chance. And I should be anxious about that? Clearly, there's a lot more to Cookaburra Disease than my genes. Maybe I should just go ahead and live my life.
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Tulka2
Solidarity. Courage. Humor.
08:34 PM on 01/13/2011
Try to tell an insurance company that, my friend.  Btw....great name for a disease.  Is it contracted in Australia?  How is it contracted?
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onionboy
Blessed are the Cheese Makers
12:19 AM on 01/14/2011
You get it from sitting in oak trees, old ones. BTW - You're correct about the insurance companies. That's why you should never get this done, especially through a physician's office where, by law, they'll have to include it as part of your medical record.

If ANYONE suspects their insurance comapny is doing this, though (ie, using genetic information to deny something), they should know that there is a law call GINA (Genetic Information Nondiscrimination Act) that makes their actions illegal.
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Julia Bailey
11:27 AM on 01/13/2011
"That was very disappointing," Topol said. "Our conclusion is it's very hard to change behavior."

That has been known for years. Ask any smoker if they know the health risks of smoking. They do. Yet they continue.

The DNA tests are a complete waste of money except for specific instances where there is a family history, then you can just get your doctor to order one (cheaper). Most of the results for the complex diseases aren't accurate because they never found actual genes for the diseases, just associated SNP polymorphisms. And if you know anything about predictive modeling, including something slightly associated in one population into a model is meaningless.
08:15 PM on 01/12/2011
This study was a missed opportunity to determine if undergoing testing increased health literacy and medical knowledge among consumers. That in itself would be a positive outcome of such testing.
Having doctors-in-training test themselves is a valuable educational tool. They not only learn how to interpret the tests but also put themselves in the patient's shoes.
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