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Whose Genes Are They, Anyway?

Penn State University [via Pete Weiss] “You’ve seen the ads from companies that promise to tell you, based on your DNA, where your ancestors came from. You’re eager to trace your family’s roots, so you order a test kit, send in your sample, and await the results. Your involvement with the company may end there, but two Penn State researchers say that for your DNA sequence—your genome—the journey has just begun. What you may not realize is that when you get your DNA sequenced, in most cases you don’t own the sequence in a legal sense. The company that sequenced it does, or at least, in our current legal framework, it can act as if it does: It can sell or give your data to other organizations, which often are not bound by the agreement you signed with the sequencing company. Even if you pay for just the basic service that will allow you to sketch your ethnic background, the company may sequence your entire genome—and then pass that information along to others.The problem is that when dealing with your genetics, it’s never just about you, says Gray. “The DNA for your blood relatives is very similar to yours, so when you put your data in the system, you’re not only exposing yourself, you’re also exposing your progeny, your parents, uncles and aunts, and other people in your family, who did not sign a waiver. Your child may have a rare disease, but your brother’s family may not want the data to be available. How does the family make that decision?”

Then there’s the possibility of being identified in ancestry databases even if you’ve never had your own DNA sequenced. In early 2018, police identified the serial rapist-murderer known as the Golden State Killer by comparing DNA from crime scenes with genome information and family trees in a publicly-available ancestry website. The genome data came from relatives who had had their DNA sequenced for genealogy purposes. Several other cases have been solved in a similar way but to less fanfare…”

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