BRCA - Statement of Support: Sir John Sulston
Sir John Sulston is Chair of the Institute for Science, Ethics and Innovation (iSEI) at the University of Manchester and the former Director of the Wellcome Trust Sanger Institute in Cambridgeshire, England. He played a central role in both the Caenorhabditis elegans worm and human genome sequencing projects. In 2002, he shared the Nobel Prize in Physiology or Medicine with Sydney Brenner and H. Robert Horvitz for their discoveries about how genes regulate tissue and organ development.
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I applaud the efforts of the ACLU and the Public Patent Foundation in challenging the patenting of human genes, and in particular the patents on BRCA1 and BRCA2. A patent on a gene specifically bestows the right to prevent others from using that gene. Rather than fostering innovation – one of the primary goals of the patent system – gene patents can have a chilling impact on research, obstruct the development of new genetic tests, and interfere with medical care.
Genes are naturally occurring things, not inventions, and the heritage of humanity. Like a mountain or a river, the human genome is a natural phenomenon that existed, if not before us, then at least before we became aware of it.
From the point of view of scientific research, human genetic sequences are as basic as you can get in terms of biological information. There is still much to learn about the products of our genes – what they look like, when or where they are produced, and how they interact with one another. In order to translate this information into medical advances, the basic data must be freely available to everyone to interpret, change and share. The situation is too complex for a piecemeal approach, in which a single entity holds the keys to any given gene.
Promoters of gene patents argue that genes are patentable when they are "isolated and purified," or removed from the body and placed in a form so that they can be replicated outside the human body. This argument seems absurd to me. The essence of a gene is the information it provides – the sequence. Copying it into another format makes no difference. It is like taking a hardback book written by someone else, publishing it in paperback and then claiming authorship because the binding is different.
Myriad's patents on the BRCA genes have had impacts well beyond the United States. In November 1995, a team of researchers at the United Kingdom-based Institute of Cancer Research (ICR) led by Michael Stratton found a mutation in some of their breast cancer patients, which appeared to lie in BRCA2. Shortly thereafter BRCA2 was sequenced by the Sanger Institute. Over the next two weeks, the ICR team confirmed their results and identified five additional mutations. But the day before their findings were published, Myriad Genetics' chief scientific officer, Mark Skolnick, filed a patent application for BRCA2. Myriad used its patent applications to claim rights over the entire BRCA2 gene, including the mutations identified by ICR.
Myriad has since claimed proprietary rights for the diagnostic tests for the BRCA genes. One of their tests focuses on a mutation discovered by the ICR team that is commonly found among Ashkenazi Jews from central and eastern Europe. Myriad has benefited directly from the work of the international scientific community, while their practices have driven up health care costs and impeded further research on these genes that might lead to future therapies.