Intellectual Property Law

Now That Is Open Source

By Deven Desai

According to AP, some professors are about to post medical records and “the DNA sequence of about one-fifth of their genes on the Web.” The goal is stimulate the ability to have less expensive and easier ways to have personal genome sequencing. The project is called appropriately enough, Personal Genome Project. Professor George Church of Harvard is the founder and principal investigator. The project wants to have 100,000 participants and has passed Harvard’s ethical review board.

A choice quote from the article

I believe that there’s a great advantage to each of us knowing our sequences, but it is also to me inconceivable that absolute genetic privacy will be maintained,” said Stanley Lapidus, chairman and CEO of Helicos BioSciences Corp.

may be accurate. The whole thing may be a precursor to a Gattaca world (possibly the best underrated film of 1997) but the article suggests that the Genetic Information Nondiscrimination Act will help protect us from the possible downsides of such information being more public. Insofar as it really prevents descrimination by employers and insurers based on genetic information, it may. Indeed, one might argue that this information requires national health care because no private company would honestly be able to provide health care and not discriminate once this information is available.

Beyond private companies, however, I wonder whether we as individuals will be able to make decisions without considering potential health issues or predispositions. Not that such concerns should stop the research. Rather it seems that a sort of genetic dowry could be part of the mating process. It arguably happens already but it could happen with more precision. The film has a great moment when Ethan Hawke’s character refuses to test Uma Thurman’s hair and see her genetic code. Of course that may be because he knew he was flawed and did not pass muster, or because the message of the film was that we are more than our genetic code.

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Full post as published by Madisonian.net on October 21, 2008 (boomark / email).