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January 2001:
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Is All Disease Genetic?
What Judges and Lawmakers Are Told!

     Everyone wants to vector the decisions of the judge and lawmaker. Reports of expert taskforces, commissions chartered by foundations and professional societies, study groups, and specialized institutes vie for attention with structures created for the same purpose by the executive agencies, courts and the legislatures themselves.  There is no dearth of information on any “hot button” issue in the North Atlantic Community. The impact of the unfolding Human Genome Project in this regard is magnified by the policy of the project to spend two or three percent of its total research budget on so-called “ ELSI” or ethical, legal and social issues, the bottom line product of which is public information. Surprisingly, given the jaundiced expectation of thought mass-produced, much of the material is very good.

     At least in the United States, national legislators are served by a corps of staff who do most of the reading, leaving the political pronouncements to their principals. It is not known what these lawmakers know, because it is difficult to determine what, if anything, they read other than loose leafed black books scanned just before a hearing or mounting the podium. Newspapers, magazines and television are good candidate sources of information for the harried Senator or Congressman.

     This is not the case for members of the judiciary and state or local legislators, whose limited staff leaves them with little choice, but to do most of their own research and develop their own ideas. Two outstanding reports, tailored for each of them, are a special edition of the journal Judicature distributed to judges with funding from the Department of Energy, and Genetics in Medicine: Real Promises, Unreal Expectations, distributed by the Milbank Memorial Fund to a group of British and American insurers, providers and legislators.

     Edited by Denise K. Casey, a science writer for DOE’s Human Genome Project, the November-December issue of Judicature, entitled “Genes and Justice” can be accessed “in its entirety” on www.ornl.gov/hgmis. Its fourteen contributors each have something important to contribute. The judges are likely to recognize one contributor, Mark Rothstein, author of an essay on “The impact of behavioral genetics on the law and the courts.” Professor Rothstein is a prolific writer of the kind of concise, authoritative summaries of law that judges like to use as a “pony” in writing their decisions. The essay’s title is interesting if for no other reason than the focus it predicts for future litigation: behavioral problems. To supplement this, the reader will find another useful article on “Genes and Behavior” by J.D. McInerney, who directs the Foundation for Genetic Education.

     A minor criticism is McInerney’s failure, in relating the role of Galton in the history of genes and behavior, to accurately describe how little Galton  [a statistician] actually knew of the extant genetic or behavioral science at the turn-of-the-century. He seems not to have spent much time reading the works of his cousin, Charles Darwin. But academically enrobed ignorance was the hallmark of the eugenics movement of Galton’s day.

     The Milbank publication is also available through the web: www.milbank.org. Written by Steve Jones, Professor of Genetics at the Galton Laboratory of University College London, it is an astute essay packed with specific and accurate information, despite the name of the writer’s institution. It clearly was written to prepare the reader before shopping amidst the plethora of genetic services and products beginning to flood the marketplace. While beautifully written, and easy to digest, Jones’ essay does sometimes suffer from the plague of casual thinking, to paraphrase Richard Lewontin, found among geneticists.

     “Most people die of a genetic disease,” states Dr. Jones. Is it true?  What message does this send to his audience of insurers, legislators, and administrators on the key issue of who to blame for the cause of disease?  Hopefully, the reader goes on to read that “more and more genes that respond to environmental stress are being tracked down.” He does emphasize “the interaction between nature and nurture, ” but forgets, or perhaps simply does not accept, Lewontin’s rejection of the notion of separable genes and environments interacting. [See “Professor Lewontin Sums it Up!” in this issue.]

---Sheldon W. Samuels   

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