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gilbertdh
26 November 2008, 02:27 PM
I've been quite interested in the DNA testing topic and have read about it here and there on forums and also in some articles in medical journals. There are frequently references to "ethics and privacy" issues but rarely are these enumerated or discussed. Generally the issues are not addressed in the testing companies policies beyond assurances that privacy will be protected. I read repeatedly that a lot more is expected from analyzing DNA in the future; what can be learned from analysis will greatly expand. So, let me just throw some things out in case anyone else has these concerns in the back of their head. Or perhaps none of this occurred to them.

Is the extracted DNA retained by the testing company or destroyed?
Who owns the DNA if it is not destroyed?
Is the privacy policy a contract between the company and the customer, or can the privacy policy be changed at any time with or without notice?
Does paying for the test provide the customer with any rights to their DNA?
What happens to the DNA if the company is sold to a larger company, say a pharmaceutical or insurance company?
How easily can the system providing anonymity be overridden or hacked?

Thanks,
David

Mark
26 November 2008, 05:28 PM
Is the extracted DNA retained by the testing company or destroyed?
Who owns the DNA if it is not destroyed?
Is the privacy policy a contract between the company and the customer, or can the privacy policy be changed at any time with or without notice?
Does paying for the test provide the customer with any rights to their DNA?
What happens to the DNA if the company is sold to a larger company, say a pharmaceutical or insurance company?
How easily can the system providing anonymity be overridden or hacked?All the questions you've asked are likely specific to the company doing the DNA testing. The first 5 are usually covered in the Terms of Service or the actual Privacy Policy itself - these should be read carefully.

The last is almost impossible to answer, as there are way too many factors that could affect a systems "hackability." It is something that is often only learned after the system has already been hacked.

Dave Wells
26 November 2008, 09:40 PM
I've been quite interested in the DNA testing topic and have read about it here and there on forums and also in some articles in medical journals. There are frequently references to "ethics and privacy" issues but rarely are these enumerated or discussed. Generally the issues are not addressed in the testing companies policies beyond assurances that privacy will be protected. I read repeatedly that a lot more is expected from analyzing DNA in the future; what can be learned from analysis will greatly expand. So, let me just throw some things out in case anyone else has these concerns in the back of their head. Or perhaps none of this occurred to them.
Those are all good thoughts... but their relevance to using Reunion for doing genealogy is what again?

kyuck
26 November 2008, 11:08 PM
Those are all good thoughts... but their relevance to using Reunion for doing genealogy is what again?
Dave you'll notice that this item is in the GENEALOGY Forum where general topics can be discussed.
Kevan

gilbertdh
27 February 2012, 03:35 PM
I posted this question a long time ago now, April 2008. In the Sunday NY Times magazine yesterday, in their The Ethicist section, someone asked about the ethics of DNA testing for genealogical research. In this particular case some family members wanted to do it, others did not. The response is very well worth reading. I believe you can read a certain number of articles for free, and so, here is a link:

http://www.nytimes.com/2012/02/26/magazine/ethicist-dna.html?_r=1&ref=theethicist

David