December 28, 2018 – Genetic Testing

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Anchor lead: What are your privacy rights if you have your DNA tested? Elizabeth Tracey reports

Perhaps you’ve given a loved one a gift of DNA testing through one of the services available for that purpose, marketed as helping them identify ancestors and lineage. Who owns the rights to that information? Jeffrey Kahn, director of the Berman Institute of Bioethics at Johns Hopkins, comments.

Kahn: What happens to genomic information when it is created through direct to consumer testing like Ancestry.com or 23 and Me? Read the fine print because there’s an answer. And the answer is the company and if you don’t like that answer then you just shouldn’t swab your cheek and give them your credit card. And that’s the business model, frankly of these companies. They aren’t making their money by taking your $99 and giving you your genomic information, they’re making their money by collecting information from many, many millions of people and selling access to that aggregated information. :33

Kahn says recent law enforcement uses of these databases have caused some to take step back, worried about privacy issues, but he notes that even with existing information it is often possible to identify individuals. At Johns Hopkins, I’m Elizabeth Tracey.