Socializing Genetic Diseases

Full text freely available at http://www.sciencemag.org/content/331/6020/1026.3.full or http://www.sciencemag.org/content/331/6020/1026.3.full.pdfInternational audienceThe sequencing of the human genome has been a major scientific adventure of the late 20th and early 21st centuries. It has played a decisive role in the development of biomedicine and has led to numerous partnerships between researchers, clinicians, and the pharmaceutical and biotech industries. Patient organizations have also been involved in these partnerships from the very beginning. In France, for instance, the French muscular dystrophy organization, the AFM (Association Française Contre les Myopathies), is a classic example. To step up the struggle against neuromuscular diseases, it created its own laboratory, Généthon, which published the first physical maps of the human genome and handed them over to the United Nations Educational, Scientific, and Cultural Organization (UNESCO) in 1993, as a heritage to humanity..