| Perils and promise of DNA testing |
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A genetic counselor can look at your family history
and discuss potential risks and what you can gain from genetic testing.
A typical consultation costs about $200, though it varies by geographical
area. In addition, while some tests, such as the one for Huntington's
disease, are highly accurate, many other tests only assess the level
of risk of getting a certain disease or condition.
Ryan Phelan, CEO of DNA Direct, an online testing service, believes consumer education and genetic counseling is vitally important.
"When someone gets a test, it is vitally important that they get the appropriate information to put the results in context because there are lots of nuances," she says. "Just looking at a report that says you aren't at high risk for a blood clotting disorder doesn't tell you much."
Privacy issues
Many consumers are attracted to online DNA testing, due to the anonymity
it offers. Fears that employers and insurers may discriminate against
people who carry the genes linked to certain diseases or conditions,
or who are more likely to get a disease, are driving consumers away
from consulting with their health-care providers.
"Some of these outfits are preying on consumers'
fears about privacy and may be making false promises about privacy,"
says Javitt. "The Web site you're going to may not be covered
by health-care privacy rules. Also, if you get a positive result
back you'll want to discuss it with your doctor in which case you'll
be in the system. By going to an outside unproven entity you may
not be any more protected."
Sharon Terry, president of the nonprofit Genetic Alliance, is concerned about the possibilities of genetic discrimination. The Genetic Alliance has been working through Congress to get a bill passed in this area for the past 10 years. "Fears about genetic discrimination are already having a chilling effect on clinical drug and treatment trials because people are afraid to get involved for fear of discrimination," she says.
For Geller, this could mean a whole new class of people: those who are neither healthy nor sick. "Until genetics, people were either healthy or they were sick," she says. "Now with this ability we have to predict susceptibility, we could have a whole new category of people -- those who are neither healthy nor sick. It's really going to affect how people perceive themselves."
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