States of Knowledge: The Co-Production of Science and Social Order

By Sheila Jasanoff | Go to book overview

Notes
1
They represent about 10 per cent of the 40,000 families concerned with the hundred MDs identified so far by the WHO.
2
A TV fund-raising event inspired by North American telethons.
3
Paterson and Barral (1994) have studied the history of the AFM from 1958 to 1981. Their work has provided extremely valuable insights into the early dynamics of the association. It was in 1981 that the AFM begun to inscribe support for research into its very structure. Its scientific council (SC) was set up in this year.
4
As we know, visualization and inscription are essential in the production and certification of scientific facts (Latour 1995).
5
According to a researcher-clinician, medical students receive no more than two hours of training in neuromuscular diseases.
6
For the complete demonstration of this point, see Rabeharisoa and Callon 1999.
7
I.e. five prime.
8
The authors: “Why were there no doctors on the first board of administrators, apart from the parents of patients who happen to be doctors?”. Mrs De Kepper: “We didn't want them”. She then added after a moment of hesitation: “We probably thought they were too ignorant. And then, it just turned out that way!” (interview with Mr and Mrs De Kepper, 15 October 1996).
9
The list of research themes publicized with the general call for tenders in 1988 illustrates this mechanism:
(i) the heart and muscular diseases: clinical and biological aspects;
(ii) mitochondrions and muscular diseases: clinical and biological aspects;
(iii) molecular genetics and Duchenne's disease, Becker's disease, and other neuromuscular diseases;
(iv) genetic map of neuromuscular diseases with genes that have not been located;
(v) nerve-muscle interactions and muscle regeneration;
(vi) biochemistry of proteins (surface antigens, membrane proteins, rare proteins, receptors, growth factors);
(vii) pharmacology: experimental models and human applications. (SC, 24 May 1988)
10
We must stress this separation that the AFM is able to maintain between the advice that experts lavish on it and the decisions that it takes for its patients, by way of the original procedures it sets up. This in no way resembles the situation described by Carricaburu (1993) in respect of the French Haemophiliacs' Association. There, the system of co-option of doctor-advisors, the auxiliary medical role assumed by the patients, and the friendship between doctors and their patients, end up making any critical thinking as regards new and uncertain situations impossible (in that case, possible contamination by the AIDS virus).

-160-

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