FRIDAY, April 1 (HealthDay News) -- At-home pregnancy tests can
tell you unequivocally in minutes whether a baby is on the way and
if it is time to call your doctor.
But, at-home genetic tests -- which may offer tantalizing clues
about future health risks -- are still in their infancy, and
genetic counselors are concerned that the results may puzzle or
even panic consumers who don't seek professional guidance.
The explosion of direct-to-consumer genetic tests over the past
several years has made it seemingly simple to test for a wide
variety of medical scenarios. A swab of the cheek or a vial of
blood can discern whether one is a carrier of an inherited disorder
such as cystic fibrosis, for instance, or predict the risk for
diseases such as breast cancer or Parkinson's. Newer tests
purportedly predict how people might respond to a specific drug or
But shelling out several hundred dollars or more for one of
these tests -- which are widely available online -- does not equip
consumers to understand the findings or their repercussions,
genetic counselors say. Because people might base medical decisions
on the results, the U.S. Food and Drug Administration decided this
month to restrict the tests on a case-by-case basis.
"To me, it's still very much in the recreational realm," said Caroline Lieber, a genetic counselor and director of the graduate program in human genetics at Sarah Lawrence College in Yonkers, N.Y. "The concern I have is the majority of the people feel knowledge is power, whereas most haven't thought through the implications at all."
The U.S. Human Genome Project, begun 21 years ago to map out
which genes are responsible for both physical and functional
traits, led to unprecedented knowledge about how genes affect
people's propensity for dozens of traits and conditions.
But few predicted at the outset the complications that
capitalism might create. A recent undercover study of 15
direct-to-consumer tests by the U.S. Government Accountability
Office found "egregious examples of deceptive marketing, in
addition to poor or non-existent advice from supposed consultation
experts," according to a recent report in
The bottom line, Lieber said, is that an increasing number of
companies' bottom lines are impacted by people's desires to live
longer, healthier lives.
"My sense right now is it's very much about those companies making money," said Lieber, whose human genetics master's program at Sarah Lawrence is the nation's first and largest. "The cynic in me says they're doing it mostly to make money, but I do think that's changing. Now phone counseling is being offered, and it's better than not having anything."
Whether conducted by phone, Internet or in person, such
counseling -- if done by qualified experts -- can help translate
hard science into information that the average consumer can
understand. For example, if a genetic test shows a low risk of
diabetes, that doesn't mean that diet, exercise and other healthy
lifestyle measures aren't necessary, said Dr. Robb Rowley, an
internal medicine physician at Amigenics, a Las Vegas-based genetic
testing and counseling group.
"At this point, I still recommend genetic testing be done through a health-care provider," said Rowley, whose patients mostly consult on their predisposition to cancer. "Some have dire consequences . . . and without having a physician involved, people might do something [to change their lives] that they wouldn't otherwise do."
Lieber said she thinks most who order at-home tests are unaware
counseling exists to help them interpret the results. Others, she
suspects, don't want the scrutiny of outsiders knowing their
personal medical history.
"Probably my biggest concern is to have them understand genetic counselors are not there to tell people what to do. I think that's a misperception about the field," she said. But, "if the results make them view themselves not as a person, but as a carrier for something -- if they haven't thought about it -- it can truly be damaging."
Rowley said the ultimate scenario, which he predicts is five to
10 years out, is to be able to use each individual's unique DNA to
optimize their care.
"The goal in the future is to be able to take that individual and say, 'Don't worry about osteoporosis, let's focus on your cardiovascular health, and by the way, this medication has a 40 percent chance of working for you,'" Rowley said. "To a limited extent, we're there now."
For more on the issue of at-home genetic testing, go to
Federal Trade Commission.
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
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