Home DNA Tests and Privacy: A Primer

Health Professional, Medical Reviewer

Home DNA tests such as Ancestry DNA, 23 and Me, and My Heritage DNA are becoming increasingly popular.  For about 70 dollars, you can find out more about your ethnicity and your risk for various health conditions. But are the tests accurate and confidential? HealthCentral spoke with consumers to find out why people are willing to risk their privacy to find out more about their genetic makeup.

One of those consumerS, Gina DellaVecchia, an attorney from Rockville, Maryland, chose to do a home DNA test out of personal curiosity. "My mom has been actively tracing the genealogy of our family," she said. "I bought a kit because I thought it would be interesting to find out more about my background."

DellaVecchia was surprised when she received the results. "My dad is Italian, so I wasn't shocked when I learned that I am 60 percent Italian. But the testing helped me to discover that I have some ties to North Africa and the Pacific Islands."

"I think that this is fascinating," DellaVecchia remarked. "I am going to encourage my children to get tested. I plan on using this information to investigate my family tree even further."

"Genetic risk testing can provide helpful information about an individual's predisposition for certain diseases and conditions," noted Scott Gottlieb, MD, U.S. Food and Drug Administration's (FDA) Commissioner in a statement on implementation of the FDA's review pathway for consumer tests that evaluate genetic health risks. "While these tests can offer significant amounts of personal risk information, they're not without their own risks ― especially if they provide consumers with incorrect or misleading information that may be used to make health choices without considering the advice of a medical professional."

When you mail off a sample of your saliva or a swab from your cheek, you are revealing your full genetic code, which is digitized and shared by the testing company. Home test kits often include an extensive questionnaire that you complete along with the test, asking questions about your health and lifestyle choices. Reputable companies will ask for your permission before they share your information with other organizations that may use your information for research related to risk for chronic disease, such as type 2 diabetes, lupus, or cystic fibrosis. If you choose to do a home DNA test, make sure you read the fine print carefully so that you have a clear understanding of what you are giving the testing company permission to share.

Many consumers are concerned that the information revealed in a test could have negative consequences related to privacy. Fortunately, the U.S. Equal Employment Opportunity Commission passed The Genetic Non-discrimination Act of 2008, which makes it illegal for employers to make employment decisions based on the genetic information of employees. This not only includes the information found in genetic testing, but also an employee's family history of disease or disorders that may predispose that person to a particular condition.

Medical professionals are concerned about how people will interpret results of home DNA tests. Unlike hospital-based genetic testing, there's no professional counseling available to help consumers interpret the results of these tests. Consumers may make drastic changes to their diet or lifestyle based on their test results. Experts feel that some of these restrictions may be unnecessary and should only be made with the advice of a medical professional.

DellaVecchia, the attorney from Maryland, opted not to participate in the DNA health analysis aspect of the test. "I've been healthy my whole life," she said. "If I'm at risk for a health problem later in life, I'd rather not know."

The bottom line

Valuable information can be obtained through genetic testing. If you have concerns or questions about testing results, seek the advice of your health care provider. But before committing to any type of medical testing, thoroughly read all materials provided related to protecting your privacy.

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Are DNA Ancestry Kits Accurate?

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