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Before Buying Genetic Testing Kit, Think About Privacy

If you're considering buying a genetic testing kit to discover your roots, don't overlook privacy issues, cautions Patricia Mertz Esswein, Kiplinger’s Personal Finance.

Sometimes, test takers learn that the people who raised them weren't their parents or that a parent was unfaithful. Fathers may not have known they were fathers. Biological mothers may not want to be found. Parents may not want to acknowledge that they gave up a child for adoption or were reproductive donors.

The National Institutes of Health recommends that you think about what information will be reported to you, whether there is information you would rather not know, and whether you can decline to receive more specific information.

Before you buy a kit, the Federal Trade Commission recommends that you scrutinize the companies' websites and privacy policies for details about how the company secures, uses and shares the information it collects. When you sign up, choose your account and privacy settings carefully.

When companies invite you to participate in research opportunities, make sure you understand what you're agreeing to. AncestryDNA, MyHeritage and 23andMe have aligned their privacy policies with best practices recommended by the Future of Privacy Forum, a think tank in Washington for the collection, protection, sharing and use of genetic data generated by direct-to-consumer testing companies.

The privacy policies generally require informed consent for the companies to share your genetic information – grouped with other people's data and without identifying personal information – with research partners. For example, AncestryDNA says their partners may include commercial or nonprofit organizations that conduct or support scientific research or the development of therapeutics, medical devices or related material to treat, diagnose or predict health conditions – "with no benefit to you."

"You're literally giving away the software of you that connects you to all your family members," says lawyer Joel Winston, whose legal practice focuses on consumer rights litigation, information privacy and data-protection law.

The companies test and store your biological sample and genetic data in-house, or they may use third parties for those purposes. You can ask them to destroy or return your sample and delete your DNA data from their system, usually within 30 days of your request. However, anecdotal evidence suggests that extraction of your data may be easier said than done, and privacy policies say your data can't be removed from research projects that have begun or have been completed.

Privacy could be breached at any point, says Winston. "I thought Equifax would have protected its information, so you never know," he says.

There's also concern that anonymous data can be re-identified. If you think that a testing company has misused your data or you otherwise have a claim against it, the burden of proof is on you and the companies will require you to go to arbitration.

Home DNA, forensic genealogy has become a powerful tool in fighting crime. By taking any genetic tests you're essentially giving up the rights to your DNA and potentially becoming a genetic informant for law enforcement agencies. This has raised concerns among privacy advocates.

A genetic-testing company stated, “If you are concerned about non-genealogical uses of your DNA, you should not upload your DNA to the database and/or you should remove DNA that has already been uploaded.”

Editor’s Note: Patricia Mertz Esswein is an associate editor at Kiplinger's Personal Finance magazine, www.Kiplinger.com.

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