French doctors puzzle over gene ownership

BMJ 1994; 308 doi: (Published 02 April 1994) Cite this as: BMJ 1994;308:873
  1. A Dorozynski

    French doctors are facing an ethical dilemma over the question of who owns the genes in a special gene bank dedicated to research into diabetes. The genes were collected by the non-profit making Centre d'Etudes due Polymorphisme Humain (CEPH) for the study of genes related to diseases. The centre, which was founded by the Nobel prize winning physician Jean Dausset, launched a special appeal four years ago for diabetic patients and their relatives to donate blood to it. About 5500 people responded, and it is those samples, which now form a gene bank, that are the source of the confusion.

    Because, he said, France lacks money to exploit the data on diabetes effectively or rapidly, the director of the CEPH, Dr Daniel Cohen, proposed handing over the gene bank to an American pharmaceutical firm. Dr Cohen, is a cofounder and shareholder in the firm Millenium Pharmaceuticals. Opponents of his proposal claim that the genes do not belong to the CEPH and that exploiting the data for profit would penalise French research.

    The gene bank was set up by Dr Pierre Frogel, a diabetologist with the public hospitals in Paris. Research on the samples has already led to the identification of an important gene coding for the enzyme glycokinase. Dr Cohen's proposal would have given Millenium exclusive access to the DNA in exchange for a small share of royalties on any resulting commercial products. But the CEPH's board of directors asked for a “more equitable agreement.” Dr Cohen then suggested that the DNA databank should be placed in the public domain. He also asked for Dr Frogel's collaboration with the CEPH to be discontinued for “internal and relational reasons.” Dr Frogel has now written to the prime minister, Edouard Balladur, protesting that the DNA, obtained from volunteer donors, does not even belong to the CEPH.

    Professor Jean Francois Mattel, a member of the French national ethics committee, admitted that DNA banks operate “in a total jurisdictional vacuum.” Professor Mattel, who is also a government consultant on bioethics legislation, believes that the use of publicly funded research for profit would be unethical. He will propose an amendment to the bioethics bill that is expected to pass its second reading at the National Assembly shortly. The amendment is likely to specify that “the knowledge of the total or partial structure of a human gene cannot be the object of a patient.”

    The Ministry of Higher Education and Research also took action, forming an expert committee of scientists and jurists to solve the question of ownership of the CEPH's diabetic databank. In the past the French have been vocal in their opposition to the patenting of uncharacterised genes and gene fragments. Now that the National Institutes of Health in the US has backed down from its application for a patent for a few thousand such uncharacterised sequences, it would be awkward for the French to exploit their genes, likewise uncharacterised, from diabetic patients.

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