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Ancestry, genetic DNA testing – what’s privacy got to do with it?

| Apr 22, 2019 | DNA, Privacy

23andMe, AncestryDNA, Helix, My Heritage DNA and others. While DNA testing was once only the stuff of crime investigations and television shows, it is now available to the masses.

Business is booming with millions of consumers willingly paying to give for-profit companies access to their DNA in exchange for information regarding everything from aversion to cilantro and caffeine use to the relatively likelihood of developing Parkinson’s disease or Type 2 diabetes, as well as ethnic and geographic heritage. These tests may even indicate a bit about one’s Ashkenazi Jewish ancestry, though not about one’s Jewishness.

There is always risk in putting your private information out there. And one’s DNA is really the most private of information about a person. A person might find out surprising things about their heritage and genetic makeup, sometimes good, sometimes bad. Certainly, test-takers have unwittingly uncovered family secrets that otherwise would have stayed hidden.

Recently, nearly 30 biological siblings identified each other as having descended from the same sperm donor. The results will sometimes turn up a geographical area of heritage that was not part of the family lore, which might be either welcome or unwelcome knowledge. The results might show that a person’s genetic makeup makes him or her more likely than average to develop some serious medical condition. And then, of course, there is always the possibility of outing a criminal who thought he’d gotten away with it. After the “Golden State Killer” was caught last year with the help of relatives who had done such DNA testing, several more cold cases were solved in the same way.

Beyond the possibility of stumbling upon a long-hidden family secret, there are other, far more insidious reasons for concern. You may not care if anyone knows that your results turned up Ashkenazi Jewish and Polish ancestry. But what if your results show that you carry the BRCA 1/BRCA 2 gene variants, aka the breast cancer genes? A few years ago, Angelina Jolie publicly opted for a mastectomy, simply because her genetic makeup made her more likely than average to develop breast cancer. You might not take such a drastic measure, but you might use the information to make some important lifestyle changes. That’s a good outcome. But what could an insurance company do with that information? What if it could use that information to determine your insurability and premium cost? What if a drug company got that information to send you targeted marketing? Those things you may care about.

Arguably, these testing companies are not designed to make money selling testing kits and test results to the consumer. They do those things, but the data they collect from customers is far more valuable. Last summer, it was announced GlaxoSmithKline bought a $300 million stake in 23andMe, allowing the drug company access to its collected data for purposes of drug research and development.

What do these companies do to protect the privacy of their customers when their customer’s data is their most valuable product? Each company has a privacy policy. In the fine print, it likely says the information may be passed on to third parties, stripped of personally identifying information and in the aggregate. For now, at least, the privacy risks may seem mostly theoretical.

But keep in mind that the Health Insurance Portability and Accountability Act of 1996 doesn’t apply here. A company’s policies are always subject to change and our laws have not kept up with those technological changes, meaning the consumer is left to rely on the testing company to do the right thing. If you do think about submitting a sample, you may want to read the fine print you usually would just gloss over and reread it periodically to make sure you are comfortable with any changes.

This article originally appeared as a column for the Cleveland Jewish News.