DNA Testing Kits: What Are the Privacy Risks?

Call me paranoid but I do believe that some people who have their DNA tested are not aware of all the privacy issues. Quoting from an article by Victoria Mcintosh, a Certified Information Privacy Technologist, as published in the CompariTech web site at http://bit.ly/3csasuC:

“Since DNA is health information, many users may expect the data is protected by privacy legislation. HIPAA, for example, is the well-known health privacy legislation in the United States and in Canada health privacy laws exist in most provinces. If a doctor requests genetic testing, safeguards and limitations on use are enforced by law.

“However, HIPAA only applies to genetic information when under the authority of ‘health care providers’. Hospitals, individual clinics and private medical practices must uphold HIPAA privacy practices, as do insurers. Other private companies do not unless they are performing a service for a HIPAA health care entity. To give a clear example, a business that provides X-ray technology for hospitals typically complies with HIPAA. This is because their hospital clients are responsible for business associate privacy practices. HIPAA does not apply, however, if the x-ray company never works with health care providers. “

You can read a lot more about this issue at http://bit.ly/3csasuC.

6 Comments

A friend recently told me that her female cousin took the Ancestry.com DNA test and made the remarkable discovery that she is the product of a “sperm bank”. She has hundreds of half siblings; she has personally met at least five – went to lunch, etc. There does not seem to be any way to discover the identity of the “donor”. He was supposedly some college kid who needed some extra money. I’m sure he does not want to be discovered at this point in his life. I wonder how long that information is protected?? Can you just imagine all of his children lining up for a cut of his estate! Whew….. what a story!

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    Of course the identity of the donor can be uncovered – there are almost certainly people in his family who have tested! But what’s this about the children lining for a share of his estate? If they have any legal entitlement it is surely to share in the estate of their legal father, not their biological father.

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    My understanding is that when a sperm donor finishes their business, there are forms signed that completely remove him from all liabilities or claims going forward. If a woman utilizes a sperm bank in order to become pregnant, she also releases the donor from all liability or claim, and such release applies to her kin as well. There is zero chance that a donor child has a claim to the bio father’s holdings.

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I think more important is the possibility of unknowingly meeting and producing offspring with a half-sibling.

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It’s pretty obvious I know absolutely nothing about sperm donors or how the legalities work! All I do know is that this gal is very upset with her parents for not telling her – especially since she is an adult. Also, the comment about possibly marrying a half sibling has definitely occurred to her. I’m glad it’s not me – way too much drama.

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    Her fears could likely be put to rest if her intended partner were to get DNA tested by the same company where she got her own test. If they were half-siblings,the test ought to reveal the relationship right away.

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