DNA and Privacy: Don’t Fret, but Read the Fine Print

Genetic information extracted and analyzed during genealogy DNA tests is arguably the most personal data about you. Like any other kind of sensitive information, it is wise to safeguard your DNA results. Privacy concerns are worth your attention, but they need not be an obstacle that prevents you from using DNA tests to further your family history research.

Millions of people around the world have submitted DNA kits to Ancestry.com, MyHeritage, FamilyTreeDNA and other services in order to learn about their ethnic history and locate relatives. Companies that extract, analyze and store your DNA have taken steps to safeguard your privacy. You should be an active partner in the effort by knowing their terms and conditions, and only sharing your results for uses you approve.

The market leaders in DNA testing build in safeguards to protect your personal information. DNA kit samples are identified with barcodes so laboratory workers do not know whose DNA they are handling. They have policies that say they will not release individual-level information to employers or insurance companies. The US Genetic Information Nondiscrimination Act prohibits discrimination based on genetic information with respect to employment and health insurance. Police agencies will not be given access to your DNA or personal information, unless they provide a court order.

The policies, terms and conditions can vary by DNA testing vendor. For that and other reasons, it is advisable to review each company’s privacy policy and terms and conditions. When you register and activate your test kit using the internet, you will be presented with opportunity to review these policies before being asked to accept them. This acceptance is typically done with a series of mouse clicks. Most consumers likely click through this acceptance without a second thought, but it is important to review them before agreeing. Clicking acceptance is legally binding like a signature.

Privacy and information-use policy documents are found on each company’s web site. They can be weighty documents. AncestryDNA’s privacy statement weighs in at some 5,000 words. That’s more than 80 paragraphs, or 17 printed pages. FamilyTreeDNA’s privacy statement runs more than 5,200 words. While that is a lot of verbiage, these documents contain valuable information about how personal data are used and protected. They will vary by global region.

One of the key issues covered in these legal documents is what you share with others about your DNA. The services that provide DNA matching to find potential relatives allow you to share DNA details with matches. What’s also important is that you can withdraw this sharing permission if you so choose. Find out what control you have before you finish and activate your DNA kit. In the case of genetic genealogy, a little advance research can go a long way.

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