Woman finds biological father with DNA test
The Greenville News
Exploring your heritage with a home DNA testing kit can be great fun and informative, too.
But experts say there are a number of things consumers should consider before depositing their saliva in the little plastic sample tube.
Direct-to-consumer DNA test kits enable users to pinpoint where their descendants came from, get a genetic health profile, and even search for family members.
And these tests have been flying off the shelves in the past two years, with the number of people being tested doubling in 2017 alone, according to MIT Technology Review.
The airwaves and social media platforms are filled with ads for genetic testing services like AncestryDNA and 23andMe. And TV shows that use DNA to trace people and their lineage, such as “Finding your Roots” and “Long Lost Family, are increasingly popular.
In addition, experts say, these tests have become more affordable, often available for less than $100.
Interest in personal history grows
AncestryDNA reports that it’s tested more than 10 million people, while 23andMe says it’s sold more than 5 million kits.
“We’re at a point where genetic testing is moving beyond a niche curiosity and becoming mainstream,” said a 23andMe spokesman.
“More and more people are seeking knowledge and looking to genetic tests for information that may impact their lives,” he added, “from uncovering genetic heritage to information on health and wellness.”
Lots of people are interested in finding out their genetic makeup, said Winn Surka, a prenatal genetic counselor with the Greenwood Genetic Center.
“It’s very popular,” she said. “It seems like more and more people that I meet have already done them.”
But Surka and other experts said consumers should be cautious about some aspects of the tests.
Don’t assume test results tell whole story
For example, direct-to-consumer testing shouldn’t be used to diagnose a condition or for medical management, said Natalie M. Beck, a senior genetic counselor at Johns Hopkins Institute of Genetic Medicine.
“That’s really not the intention of the testing,” she told The Greenville News. “People think they’ll get a custom guide about their health, and we’re not at that point with any genetic testing, let alone direct-to-consumer tests.”
Surka agreed, saying the DNA results from these tests are not comprehensive and only show a limited number of variants. If they reveal a genetic variant for breast cancer or Alzheimer’s disease, for instance, that doesn’t mean you will go on to develop that disease, she said.
“What we’re learning is that there’s a lot more variation. There is no normal or abnormal. Those words don’t really mean much to us anymore,” Surka said.
“And if you don’t have the right person interpreting that variant,” she added, “it could cause a lot of stress over something that might not be a problem.”
Discuss testing with a counselor
Because home testing is not the same as full genetic testing, one patient’s relative risk may be different than another’s, Beck said, so a test could be falsely reassuring or alarming.
“It’s not considered medically diagnostic,” she said. “Consumers considering any kind of genetic testing should meet with a genetic counselor to talk about all these potential outcomes before a test so they can at least make a decision that’s right for them.
“In most cases,” she added, “it doesn’t tell people very much about their health.”
Also, Surka said, because genetic testing reveals medical information about relatives, some may not want to know the medical findings.
How genetic information is used
What happens with that genetic information is another concern.
Testing companies have the DNA of millions of people, said Surka, and that medical information is then owned by the company. And some of it may be turned over to a second party database, she said, which personally makes her uncomfortable.
The majority of databases aren’t open now, Beck said, but how that gets applied globally in the future is unknown.
“Many companies actually sell consumer DNA information, sometimes to pharmaceutical companies to develop drugs,” she said.
“There are no regulations regarding buying or selling of genetic information,” she said. “(And) … it may be many years before there’s any comprehensive legislation to take care of any of this.
“So what’s happening to people’s genetic information?”
Beck advises consumers to read the test information carefully, including the fine print, because there may be no way to opt out of that provision.
Also, she said, if a consumer chooses to share the information after testing with another party, he or she has no control over who can see it.
“We only understand a small portion of the genes in our genome now,” she said. “But we anticipate knowing it all in the coming decades.”
And while some may be concerned about the impact this genetic information has on health insurance coverage or employment, Beck said the Genetic Information Nondiscrimination Act of 2008 protects people who pursue genetic testing before the onset of symptoms from being dropped from insurance or genetically discriminated against in employment.
It doesn’t apply to people with federal health insurance, or to life insurance, long-term care or long-term disability insurance, she said.
Tests can bring unwelcome surprises
Accuracy of the results is another concern, Beck said, adding that people are generally not aware of the limitations.
“None of it is 100 percent accurate or guaranteed either,” said Beck. “It depends on the platform, and how they are gathering available ancestry data.”
And while finding cousins or other extended family can be a wonderful experience, it can also be an unhappy one.
“We know of many stories where someone learned that one of the people who raised them is not their biological parent or they have half-siblings from another relationship their parent had that they did not know about,” said Beck.
“And this information can be upsetting or harmful,” she added, “more so than if you learned about a third cousin twice removed.”
Finally, some found relatives may not want to have contact.
Finding your ancestors and where you came from is a cool thing to do, Surka said. But consumers need to think about what they’re getting into.
“Consumers need to know, ‘What am I getting out of this?’ and ‘Where is it going?’ before making these choices,” Beck said. “We would like patients to be better informed.”
WHAT TO CONSIDER BEFORE YOU TEST YOUR DNA
► ANCESTRY. Testing can reveal where your ancestors came from as well as their genetic makeup. This information may be surprising for some people.
► FAMILY. Testing can reveal information about biological relationships to other family members. This can lead to the discovery of unknown relatives as well as to the discovery that you are not related to someone you thought was a family member, which happens most often in the case of paternity.
► HEALTH. Testing can uncover gene variants for inherited health conditions, such as breast cancer or Alzheimer’s disease. That doesn’t necessarily mean you’ll get the condition, but it could mean you can pass it on to your children. It’s important to consider what it might mean for you and your family, and whether you could benefit from genetic counseling.
► RELATIONSHIPS. Because genetic testing reveals information about you and those closely related to you, it may affect relationships with some family members.
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