[Next-Generation Sequencing Book]
  • [Photo] J.W. Bizzaro • August 4, 2000
    ``A California start-up called DNA Sciences is introducing a Web site today [Aug. 1] that will recruit people to donate their DNA to help find genes that cause disease. The company, which has James D. Watson, a discoverer of the DNA double helix, as a director and James H. Clark, Netscape's founder, as an investor, hopes to get 50,000 to 100,000 people to contribute to its `gene trust' by appealing to their altruism....The companies all say they obtain the informed consent of patients to have their DNA used and operate under the purview of institutional review boards or ethics committees. They also say they `anonymize' the data, so it cannot be linked to a particular person. But critics say hackers could gain access to the identity of patients stored in computers. They say assurances that data will not be sold to others, like insurance companies, are not ironclad.''

    Full story (useless free registration required):
    http://www.nytimes.com/library/financial/080100dna-web.html

    This is interesting. On the one hand, these are corporations planning to make proprietary people's individual genetic makeups, and profit from it. But, on the other hand, the donors would not want their profiles to be made public. It's the classic battle of privacy versus the freedom of information.

    Reference by Snodeal.org.

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