She says, “I think there is definitely value to the kits, beyond just entertainment. You can find out a lot of information about your ancestry and it’s extremely accurate. You can find medical information which is accurate as well.”
How accurate is it?
“The testing is very accurate,” says Lipschutz, “The labs are all what we call CLIA validated. So they are certified labs. However with the hereditary cancer test in particular, there is a disclaimer that everybody should have their result validated with a specialty lab before they take any action.”
What should consumers be concerned about?
She answers, “I think one of the pitfalls is not knowing exactly what you might find out, not being ready for that and maybe not being able to interpret the results. If someone test positive for one of these hereditary cancer mutations, it’s very profound information. It changes your risk to developing cancers.”
Why is it important to share the information with a doctor or genetic counselor?
Lipschutz points out, “Sometimes they use terms like variant which some people might think just means a difference that could be a benign difference, but it could also be a disease causing or pathogenic difference so I think that would be important. If they come back negative, which most people do because these hereditary cancer syndromes are rare, we just drive home the point this does not mean you can’t get cancer. You still have to follow general population screening guidelines.”
How private is the information?
“I’m not sure about that. These labs, I don’t think are bound by HIPPA, the way we would be in the hospital. When we test anybody in the hospital, we are using the HIPPA guidelines. I think anything that is in the internet and is associated with social media, there is probably an expectation that it is not private,” says Lipschutz.
Something else to consider?
She says, “If you test positive, it means your close relatives have a 50% chance of having that same mutation so you’ve now sort of opened a Pandora’s Box of getting information that is going to affect more than just you.”
Also, Lipschutz says, there’s other health information revealed as well, such as risk of diabetes, heart disease and dementia.
If you have any concern about your at-home DNA test results — talk to a specialist about it.
Have a health question? Send it to News8OnCall@WTNH.com