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History of NIH DNA Policies

  1. Jan 20, 2015 #1
    I have one question about the history of the policies regarding DNA privacy the NIH has instituted. Simply, was there a particular study or research breakthrough that was the tipping point for instituting privacy measures?

    I just read an ethics paper called "Privacy and the Human Genome Project" by Wiesenthal and Wiener, and it appears everything was coming to a head at the time the policies were created. The combination of cheaper testing, the role of the government, and the countless studies about specific genes appears to be the catalyst for the policies. But, again, if there was any one result or group of results you know of that also spurned the change I would greatly appreciate the help.

    Anyone have any leads or know anything about this?
  2. jcsd
  3. Jan 20, 2015 #2


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    I don't know the complete history, but I know there was a recent case involving the genome sequence of the HeLa cell line (originally isolated from a patient at a research hospital) that prompted some re-thinking about privacy issues. See http://www.nature.com/news/deal-done-over-hela-cell-line-1.13511 for this particular case. The book, The Immortal Life of Henrietta Lacks gives a broader history of HeLa cells and the ethical issues surrounding that particular cell line.
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