At-Home Genetic Tests
If you’ve flipped through the magazines on the newstand recently, you may have noticed the plethora of advertisements for prescription-only drugs. As people become better informed about their healthcare choices, they are being directly targeted by ads that used to be mainly for the eyes of physicians and other healthcare providers. While knowledge is power, sometimes knowing only part of the picture and not even understanding that is dangerous.
For example, many of the drugs that are by prescription only in the U.S. can be purchased over the counter in Asia. Most consumers are not aware of contradications, side-effects, and drug interactions. They may have started taking the drug because a neighbor or relative was prescribed it and then they proceed to take the dosage they think feels right - all without ever consulting a physician.
Gene testing is becoming available to the home consumer but it remains to be seen if the information provided by these tests can be successfully used to improve our health without the advice of trained specialists. My fear is that without a proper understanding of genetics and medicine, people might be driven to try fad medications and naturopathic remedies all based on a misinterpretation of the results of home genetic tests.
From The Baltimore Sun, May 30, 2005,
Without ever talking to a doctor, consumers can buy kits off the Internet that promise to tell them if they are at higher risk for breast cancer, blood clots or other medical problems.
The trend is sparking a debate over whether such direct-to-consumer sales are a good idea. Critics including bioethicists and many physicians worry that patients won’t get sufficient guidance about what test results mean, how to deal with thorny family issues and whether preventive measures should be considered. And because the testing field is little-regulated, some are concerned about the accuracy of test results.
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Consumers who order home testing often are looking to protect their privacy. But privacy has its limits. If a life or health insurer asks about genetic tests, people must answer honestly or risk not having claims paid later if the insurer finds out they lied.
If the results are medically important, “that information is probably going to end up in your medical record” anyway, says Kathy Hudson, director of the Johns Hopkins center on genetics.
There’s nothing wrong with wanting to have more information on our bodies and our health. But if it were me, I’d visit a trusted physician armed with the results of any home tests, whether they be pregnancy, cholesterol, or genes, plus any research I might have done on my own. Together, we can decide what is best for me.
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6 opinions for At-Home Genetic Tests
Brad
May 30, 2005 at 8:32 pm
This type of testing has its own unique issues in the area of HIV. A variant of the CCR5 receptor protein has been found to provide some protection from infection with HIV and progression to full-blown AIDS. A home test for that allele could lead to an increase in risky sexual behaviors, which might ultimately increase incidence of sexually transmitted diseases.
I imagine it is only a matter of time before the CCR5 test becomes available in some sort of at-home form.
Lei
May 30, 2005 at 8:41 pm
Brad, you make an excellent point. A person who doesn’t carry the susceptible gene variant might think it’s license to act however they want no matter how unhealthy! I think the same might be happening with home HIV tests, don’t you think? It’s apparent that we still need campaigns to remind people that it’s not just HIV but other STD’s as well that they should be worried about when it comes to dangerous sexual behavior.
anonymous
Dec 9, 2006 at 12:10 am
While I agree that CCR5 haplotype information may be misinterpreted by the patient, this information may also be used in a positive way. Recent drug discovery efforts have focused on CCR5 entry inhibitors, thereby a patient may respond differently to future drugs based on his genetic profile. We already do standard resistance testing for protease inhibitors and other HIV drugs as part of overall treatment. CCR5 testing is meant to apply to HIV positive patients as a measure of how likely they will progress - though it has several formidable hurdles before it becomes reliable. Patients must realize that just because a test may be clinically significant that is no guarantee a laboratory will utilize it due to legal and practical issues. Home testing offers an alternative. A company already offers this as a out-of-pocket test though it makes no claim as to clinical outcomes. Bottom line, home testing brings up several challenging issues especially in a stigmatized syndrome such as HIV, but it cannot be dismissed as worthless.
Josh
Dec 11, 2007 at 8:30 am
There is now an at-home test for the CCR5 delta 32 gene, available at http://www.hivgene.com. Certainly this test does not allow anyone to engage in risky behavior. Rather, it provides a certain amount of peace of mind, especially for at risk populations where contracting HIV is always a fear.
Also, the CCR5 mutation is an indicator of disease progression in HIV positive individuals. Studies show that HIV positive heterozygotes, on average, progress to AIDS at a slower rate than those without the mutation. Clinical conclusions are not yet possible based on this information but our test also provides peace of mind for HIV positive individuals.
Elaine
Dec 11, 2007 at 9:15 am
Thank you Josh. Just checked out your website. Looks a promising test. Elaine
Andrew Meyer
Dec 11, 2007 at 7:12 pm
Dr. Lei,
I want to decode my genome by the end of the year. I’m actually raising donations for 23andMe’s Personal Genome Service. I just started reading your blog and its awesome.
-Andrew
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