chapter  7
29 Pages

Mapping the human genome at Généthon laboratory

The French Muscular Dystrophy Association and the politics of the gene
WithAlain Kaufmann

When I started my fieldwork at Généthon in February 1994, the only information I had access to about this laboratory came from newspapers and from Daniel Cohen’s book Les gènes de l’espoir (Cohen 1993). So, like anybody from the general public, my view of what was going on there was quite naïve. Of course, I was aware of the fact that something special was happening. Being trained as a biologist as well as a sociologist and wanting to investigate some issues of the ongoing Human Genome Project (HGP), I had noticed the specific interest of this very original setting. So I decided to apply for a research grant from the Swiss National Research Fund.