The 'charity business' and health research policies: How the AFM activatespublic research.

Created by patients in 1958, the French Myopathy Association (AFM) decided in the early 1980s to become involved in research. It collects most of its funds from the general public through the 'Telethon', a yearly television s how. It has thus been able to invest significant amounts of money on genome s, thus developing its own means of research (the 'Genethon') and funding p ublic research groups, in particular at the National Centre for Scientific Research (CNRS). What impact has the AFM had on the scientific policy of th e CNRS's life sciences department? The AFM is a single-issue group - small, wealthy and flexible - that can easily adapt its strategies whereas the CN RS, to which most research personnel belongs, has a less flexible strategy owing to the diversity of its assignments and its considerable fixed costs. Analysed over a 5-year period from 1991 to 1995, AFM-CNRS interactions hav e ranged from a low level of involvement related to the circumstances throu gh a favourite 'client' relationship but without any modification of resear ch themes and then to a reciprocal influence between research orientations and a 'strategic kernel' made up of a dozen CNRS laboratories. In this kern el, the AFM sees the CNRS as an agency for providing means rather than a st rategic actor in scientific policy. (C) 2000 Editions scientifiques et medi cales Elsevier SAS.