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Home DNA testing kits have exploded in popularity in recent years, to the point where they’ve become a common holiday gift. One estimate found suggests more than 26 million people have used one.
The appeal of these tests is obvious. Advances in science now make it possible to test a half million markers in the human genome to answer long-lingering questions about a person’s heritage and potentially identify risk of future health problems. Popular testing companies like 23andMe and Ancestry tout stories of customers who have discovered previously unknown roots, found family members they weren’t aware of or caught health problems early thanks to their results.
These stories make a potent case for taking a home DNA test yourself, or giving one to someone in your life. But there are many under-the-radar issues to consider before handing over your DNA.
Why there’s debate
Submitting a DNA test means putting the most personal information imaginable into a complicated and constantly changing marketplace that many customers may not fully understand.
The first thing to know is that the results may not be entirely accurate. Testing companies do their best to track a sample’s geographic lineage, but their findings are better understood as estimates, rather than definitive truths. This is especially true for people with non-European ancestry. Doctors have advised against relying too heavily on health-related results because, even when accurately recorded, genetics is just one of a long list of factors that affect health.
Experts also warn that customers should be sure they’re prepared to handle results that can sometimes upend families or reveal upsetting medical news. There is also concern about where the DNA data goes after it has been submitted. Some testing companies share data with third parties, including law enforcement, pharmaceutical companies and insurance companies.
Whether they’re aware of these concerns or not, it’s clear that more and more people are going to decide it’s worth it to take a home DNA test.
As the industry grows, the number of people who might need help dealing with the results is also increasing. The field of genetic counseling — comprising medical experts who advise patients on the findings from DNA tests — is expected to grow dramatically over the next few years. Many support groups have also emerged, helping connect people who have had their families turned upside down by unexpected test results.
The tests are less accurate for minorities
“Ancestry DNA companies can often track down European DNA to specific countries. But if you’re a minority, your report might be vaguer.” — Brian Resnick, Vox
Results can unveil family secrets you may not want to know
“First came the home DNA kits, with their promise of light fun. … Now comes the fallout: As millions upload genetic results to AncestryDNA and 23andMe and smaller firms, many are learning devastating news. They’re not their sister’s full sibling, not related by blood to anyone in their entire family, not who they thought they were.” — Beth Teitell, Boston Globe
Promising results don’t mean a clean bill of health
“While false positives are concerning, there is also the concern of a false negative, which falsely reassures consumers that they are at low risk for a potentially life-threatening genetic disorder that they were not fully tested for.” — Dana Farengo Clark, Philadelphia Inquirer
Results should be considered estimates
“The companies’ pie charts and fancy infographics that show little arrows and offer fascinating stories about human history make for great conversation, but they are actually more like educated guesses than like census documents.” — Debra Bruno, Washington Post
Results can affect some types of insurance coverage
“At present, long-term care insurance, disability insurance and life insurance can prohibit you from coverage if your genetic tests show a propensity for diseases and disorders. The societal implications of such discrimination could greatly determine who does and does not receive care based simply on profile risk alone.” — Nicole Fisher, Forbes
There is no way of knowing how DNA data will be used in the future
“Like cell phone data a decade ago, it’s hard to say how all this information might be employed in the future. Imagine drug companies using it to target ads, life insurers using vast networks of relatedness to determine risk, or a scorned ex-lover employing the technique in some very 21st century stalking.” — Kristen Brown, Bloomberg
An individual’s DNA sample also contains info of blood relatives
“You decide to contribute your DNA to one of these services and you have by default included your parents, your siblings if you have any, your kids if you have any or your future kids, and future nieces, nephews and everybody else,” — Jen King, consumer privacy expert, to USA Today
The tests capture only a small part of disease risk
“The crux of the problem is that our genetics are only a piece of the puzzle that influences our health. Sure, you can sometimes point to a specific gene mutation that always makes someone sick in a specific way if they carry it. But much more often, it’s a complex, barely understood mix of gene variants that predispose us to develop cancer or heart disease — and that risk can be amplified or muted by our environment.” — Ed Cara, Gizmodo
Some testing companies make claims not backed by science
“The problem, according to experts, is that these companies are promising information about DNA with a granularity that even scientists can't deliver.” — Dan Robitzski, Science Alert
DNA isn’t everything when it comes to heritage
“Ancestry is a legacy, not a bloodline. Our genetic script may be one of the most valuable things we own, but it’s never the whole story.” — Georgina Lawton and Daisy Ifama, Guardian
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Cover thumbnail photo illustration: Yahoo News; photo: Getty Images