Citizens Enter the Laboratory Whilst Scientists Take to the Streets

  • Massimiano Bucchi
  • Adrian Belton


France, the mid-1950s: The de Keppers’ son was dying from a rare form of muscular dystrophy. Specialists and pharmaceutical companies were loath to concern themselves with this pathology: the former because they found it professionally frustrating to treat, since the likelihood of success was practically nil; the latter because the research and development of drugs would require huge investments to the benefit of only an extremely small number of patients. Dystrophy, indeed, used to be an “orphan” disease ignored by research, health institutions, and society.

Yet the de Keppers refused to watch their child die without doing anything about it. They contacted families in the same situation and worked with them to compile detailed accounts of the pathology’s symptoms and evolution. They exchanged practical tips on how to alleviate the sufferings of their children; they signalled small glimmers of hope raised by articles published in specialist journals; and they circulated increasingly detailed information on the benefits and side effects of therapies.


Muscular Dystrophy Social Movement Public Participation Consensus Conference Interpretative Framework 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.


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Copyright information

© Springer Science+Business Media, LLC 2009

Authors and Affiliations

  1. 1.Dipto. Sociologia e Ricerca SocialeUniversita di TrentoTrentoItaly
  2. 2.Società editrice il MulinoBolognaItaly

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