EMBL Forum Lectures
Daniel J. Kevles
Genes, Disease, and Patents: Cash and Community in the Human Genome Project
Wednesday, 10 June 2009, 16:00, Large Operon
Daniel J. Kevles, Yale University
In 1988, in a report on the emerging Human Genome Project, the National Research Council called for keeping open the data the project would generate, declaring that ". . . access to all sequences and material generated by these publicly funded projects should and even must be made freely available."
The admonitions to openness of course expressed the scientific community's longstanding communitarian norms, part ethical and part practical – and, measured against actual practice, part mythological -- that knowledge of nature is to be publicly shared. This was especially apropos for human genes, since much of the knowledge about them had been developed with the support of the federal government. However, the arguments for openness ran counter to the drive of both universities and the biotechnology industry to obtain patents on the proliferating number of genes associated with disease, a drive encouraged by the Bayh-Dole Act, of 1980, which strongly encourages the patenting of innovations arising from federally sponsored research.
Of course, there is nothing inconsistent with patenting a gene and then disclosing data about the gene, but the secrecy required before the patent is filed restricts the openness of the research process. Perhaps more important, some biotechnology companies are exploiting their intellectual property rights in human genes in ways that run counter to sound medical practice. Biomedical scientists in Europe have tended to ignore the IP claims of such companies, a few have been found wanting in the European Patent Office. More generally, a growing number of observers have contended that it may be necessary to regulate the property rights represented by patents in human genes just as society has long regulated property rights in many other areas essential to the economy and public health.
Daniel J. Kevles is the Stanley Woodward Professor of History at Yale University and Professor (Adjunct) of Law at the Law School. His work deals with a variety of issues in science and society that involve the law, including due process in allegations of scientific fraud and misconduct, genetic information and privacy, classification and national security, and intellectual property in biotechnology. Professor Kevles received his B.A. from Princeton University (Physics) in 1960, training at Oxford University (European History) from 1960-61, and his Ph.D. from Princeton (History).