I had very interesting conversations with both of my classes in the last week over the sharing of genetic information in the context of learning about the Genetic Information Non-Discrimination Act (GINA). GINA generally prohibits employers and insurers from using genetic information to discriminate in employment or insurance underwriting.
People mistaken believe that GINA protects the privacy of all genetic information. But it doesn’t. It only applies in very specific instances. When individuals take a swab from the inside of their mouth and send it to private companies for analysis to determine their ancestry or genetic predisposition, they are sending their DNA to a company that is not regulated like a doctor’s office or hospital. If an individual gets DNA testing at a doctor’s office or hospital, the doctor or hospital can perform the analysis, but then has very specific legal requirements on what they cannot do with the information, including disclose it to others or sell it.
Before you send that swab to a private company, take a look at their Privacy Policy so you are fully informed about what they are doing with the information, to who they are disclosing it, and to whom they are selling it. Try to determine how they can aggregate your genetic information with other information and if it can be disclosed to your life insurer, employer or law enforcement.
Here are some interesting articles to consider before you send that swab:
https://apple.news/A6vDj8z7GQFe6psTEYRZGTw
https://www.bloomberg.com/news/articles/2019-02-01/major-dna-testing-company-is-sharing-genetic-data-with-the-fbi
https://www.gsk.com/en-gb/media/press-releases/gsk-and-23andme-sign-agreement-to-leverage-genetic-insights-for-the-development-of-novel-medicines/
And you may wish to discuss this decision with the rest of your family, because when you send your genetic information to these companies, you are in effect sending your entire family’s as well without their consent.
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