Knowledge is power, but can you handle it?

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No regulatory body ensures that genetic tests do what they purport to do, unlike oversight of new drugs, she added. While Javitt said in the case of some genetic tests, direct-to-consumer services could be empowering and helpful to the consumer, in the current environment there is cause for concern. "Pretty much anyone today can operate over the Internet and purport to test for anything with very little barriers," she said.

DNAdirect tries to answer these concerns by offering a "gold standard" online, the company said. It asks prospective customers of its tests--which can cost anywhere between $585 and $3,300-?to fill out a medical history questionnaire before buying one. It then develops detailed online reports for customers that combine lab results with personal history so that the person can understand his or her results, "in context."

DNAdirect offers eight different gene tests for things such as breast and ovarian cancer. It employs certified genetic counselors to take calls from customers after more information concerning their tests. It also draws on the expertise of "domain experts" in areas like ovarian and breast cancer to inform its tests and counsel customers.

But what if personal genetic information will fall into the wrong hands and be used against them? Some worry an insurance company could deny coverage if it knows a patient is genetically prone to developing a certain disease.

For now, it's unclear whether and how the insurance industry and the military are using genetic information. Congress has been working on related legislation for several years without success.

Rep. Judy Biggert, an Illinois Republican, introduced the Genetic Nondiscrimination Act, or HR 1227, last year. The bill would allow consumers to pursue genetic testing but would prohibit insurance companies from denying coverage or charging higher premiums for consumers known to have a predisposition for a genetic disorder.

It would also prohibit employers from requiring applicants to submit results of genetic testing. The bill now has 182 co-sponsors, but it may stall before it becomes law, according to executives from the National Institute of Health. A similar bill, S 306, passed the Senate by a vote of 98 to 0.

On Apr. 29th, Dr. Francis Collins, director of the NIH's National Human Genome Research Institute, wrote in a policy alert that people's fear about genetic discrimination is threatening the progress of medical research, and legislation to govern genetic testing isn't going forward because businesses that are worried about "nuisance lawsuits" are lobbying against it.

In some cases, genomics is already ushering in personalized medicine, he said. Oncologists can take genetic information from the tumor of a woman with breast cancer and use that to determine whether she needs ancillary chemotherapy after the tumor has been removed, Collins said.

All that said, when it comes to fatal diseases, experts say some people would rather stay in the dark.

"Many people just don't want to know," said Benkendorf, "so that's why they aren't taking tests."

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End of Health Insurance?

Does anyone wonder what will happen if people understand their
genetic risk and insurance comapnies do not? High risk individuals
will take more coverage and low risk ones will take less, reducing
the intake to health insurance companies and increasing their
payouts. Insurance business models work because their customers
cannot accurately estimate their own risk. Health insurance cannot
survive in an environment where they know so much less
information that thier customers. Where does this put the future of
American healthcare?