Paris
FRANCE鈥檚 largest charity for research on genetic diseases, the Muscular
Dystrophy Association (AFM), is under fire for shoddy management and lax
scientific evaluation. The French national audit court last week released a
long-awaited report on the AFM鈥檚 operations, which it says lack rigour and
transparency.
The court studied the AFM鈥檚 1993 accounts. That year the association spent
381 million francs raised through public donations, mostly through its annual
telethon. But it failed to inform the public how that money was spent, says the
report. Forty five per cent went to basic research, yet only about one third of
that spending was evaluated by the AFM鈥檚 scientific committee.
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Even where the committee was involved, the report questions the quality of
its evaluation. One third of the research grants went to members of the AFM鈥檚
scientific commissions on genetics and clinical research, or their colleagues.
These insiders received twice the average number of grants of other
laboratories. While the audit court acknowledges that this could be explained by
the limited number of specialists in certain fields, it says that the AFM must
urgently improve its evaluation.
AFM also failed to apply proper financial evaluation of the projects it
funded, the report adds. It points to a pharmacology project proposed by a team
which included an employee of AFM. One of AFM鈥檚 scientific commissions
recommended a grant of 500 000 francs, but the AFM gave it 700 000 francs, with
no written explanation for the increase.
By far the biggest project funded by the AFM was the G茅n茅thon
gene mapping laboratory located in Evry, south of Paris. In 1993 the court
estimates that the AFM financed about three quarters of the project鈥檚 budget of
98 million francs. In spite of G茅n茅thon鈥檚 success, the report
criticises its confused accounting and lack of proper scientific evaluation.
The court also attacks the AFM鈥檚 practice of giving grants directly to
researchers, rather than to the public organisations which employ them. 鈥淢aximum
rationality is needed to manage [charitable] funds even if maximum emotionalism
is used to collect them,鈥� warned Pierre Joxe, head of the audit court. He urged
French MPs to approve a law which would grant the social affairs inspectorate
power to audit charities.
Bernard Barataud, president of AFM, last week defended the association鈥檚
activities. 鈥淲e have a certain oral tradition . . . ideas come up in
conversation,鈥� he said. 鈥淲e鈥檒l never produce written reports on everything.鈥�