How did uncommon disorders become 'rare diseases'? History of a boundary object

Sociology of Health and Illness

Volumn 31, Issue 4, 2009, Pages 463-477

  Huyard, Caroline ^a  

^a ÉCOLE DES HAUTES ÉTUDES EN SCIENCES SOCIALES   (France)

Author keywords

Boundary object; Category; Orphan drugs; Rare diseases

Indexed keywords

ARTICLE; CLASSIFICATION; DRUG INDUSTRY; DRUG MANUFACTURE; EUROPE; HEALTH PERSONNEL ATTITUDE; HISTORY; HUMAN; LEGAL ASPECT; PHYSICIAN; RARE DISEASE; SOCIOLOGY; UNITED STATES;

ATTITUDE OF HEALTH PERSONNEL; DRUG INDUSTRY; EUROPE; HISTORY, 20TH CENTURY; HUMANS; ORPHAN DRUG PRODUCTION; PHYSICIANS; RARE DISEASES; SOCIOLOGY, MEDICAL; UNITED STATES;

EID: 65349092249     PISSN: 01419889     EISSN: 14679566     Source Type: Journal    
DOI: 10.1111/j.1467-9566.2008.01143.x     Document Type: Article

References (43)

1. Anon 1974) Drugs for rare diseases: whose responsibility?, The Lancet, 1, 7855, 440.
2. Anon 1976) Drugs for rare diseases, The Lancet, 2, 7990, 835 6.
3. Arno, P., Bonuck, K. Davis, M. (1995) Rare diseases, drug development and AIDS: the impact of the Orphan Drug Act, The Milbank Quarterly, 73, 2, 231 52.
4. Asbury, C. (1985) Orphan Drugs: Medical versus Market Value. Lexington, MA : Lexington Books.
5. Aymé, S. (2001) Les maladies rares: un problème de santé publique longtemps ignoré, Revue d'épidé miologie et de santé publique, 49, 4, 329 30.
6. Barataud, B. (2001) Cinq mille maladies 'rares', le choc de la génétique. Paris : Avis et rapports du conseil d'analyse économique.
7. Brewer, G. (ed.) (1983) Orphan Drugs and Orphan Diseases: Clinical Reality and Public Policy: Proceedings of a Conference, Ann Arbor, Mich., 27-29 September 1982. New York : Alan R. Liss.
8. Bud, R. (1991) Biotechnology in the twentieth century, Social Studies of Science, 21, 3, 415 57.
9. Cambrosio, A., Keating, P., Schlich, T. Weisz, G. (2006) Regulatory objectivity and the generation and management of evidence in medicine, Social Science and Medicine, 63, 1, 189 99.
10. Carter, S. Michael, M. (2003) Signifying across time and space: a case study of biomedical educational texts, Sociology of Health and Illness, 25, 2, 232 59.
11. Dalgalarrondo, S. (2004) Recherche clinique et innovation médicamenteuse: quelle place pour les patients et leurs représentants? Une comparaison sida, cancer et maladies rares. Paris : Rapport pour l'Agence Nationale de Recherche sur le Sida, 2004. (http://cesta.ehess.fr/document.php?id=76)
12. Daston, L. (1992) Objectivity and the escape from perspective, Social Studies of Science, 22, 4, 597 618.
13. Dodier, N. (2003) Leçons politiques de l'épidémie de sida. Paris : Éditions de l'École des Hautes Etudes en Sciences Sociales.
14. Epstein, S. (1995) The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials, Science, Technology and Human Values, 20, 4, 408 37.
15. Fujimura, J. (1992) Crafting science: standardized packages, boundary objects and 'translation'. In Pickering, A. (ed.) Science as Practice and Culture. Chicago : University of Chicago Press.
16. Goodman, J. Walsh, V. (2001) The Story of Taxol: Nature and Politics in the Pursuit of an Anti-cancer Drug. Cambridge : Cambridge University Press.
17. Gross, M. (2002) Ethics, policy and rare genetic disorders: the case of Gaucher disease in Israel, Theoretical Medicine, 23, 2, 151 70.
18. Guston, D. (1999) Stabilizing the boundary between US politics and science: the rôle of the office of technology transfer as a boundary organization, Social Studies of Science, 29, 1, 87 111.
19. Haffner, M. (1991) Orphan products: origins, progress and prospects, Annual Review of Pharmacology and Toxicology, 31, 603 20.
20. Haffner, M. (2006) Adopting orphan drugs: two dozen years of treating rare diseases, New England Journal of Medicine, 354, 5, 445 7.
21. Hauray, B. (2006) L'Europe du médicament: politique, expertise, intérêts privés. Paris : Presses de Sciences Po.
22. Hedgecoe, A. (2003) Expansion and uncertainty: cystic fibrosis, classification, genetics, Sociology of Health and Illness, 25, 1, 50 70.
23. Hilts, P. (2003) Protecting America's Health. The F.D.A., Business and One Hundred Years of Regulation. New York : Alfred A. Knopf.
24. Huyard, C. (2007) Rendre le rare commun: Expériences de maladie rares et construction d'une action collective, doctoral dissertation, Paris : EHESS.
25. Latour, B. (2007) Changer de société, refaire de la sociologie, Paris: La Découverte, (original edition : Re-assembling the Social. An introduction to Actor-Network Theory. Oxford : Oxford University Press, 2005).
26. Law, J. Singleton, V. (2005) Object lessons, Organization, 12, 3, 331 55.
27. Mol, A. (2002) The Body Multiple: Ontology in Medical Practice. Durham, NC : Duke University Press.
28. Mol, A. Law, J. (1994) Regions, Networks and Fluids: anaemia and social topology, Social Studies of Science, 24, 4, 641 71.
29. Novek, J. (2002) IT, gender and professional practice: or why an automated drug distribution system was sent back to the manufacturer, Science, Technology and Human Values, 27, 3, 379 403.
30. Porter, T. (1995) Trust in Numbers, the Pursuit of Objectivity in Science and Public Life. Princeton : Princeton University Pressn.
31. Provost, G. (1968) Homeless or orphan drugs, American Journal of Hospital Pharmacy, 25, 609.
32. Salomon, M. (ed.) (1988) Les orphelins de la santé. Puteaux : Edinter.
33. Sismondo, S. (2004) An Introduction to Science and Technology Studies. Malden, Mass Blackwell Publishings.
34. Slaughter, H. Rhoades, G. (1996) Research and development policy coalition and commercialization of academic science, Science, Technology and Human Values, 21, 3, 303 39.
35. Star, S.L. Griesemer, J. (1989) Institutional ecology, 'translations' and boundary objects: amateurs and professionals in Berkeley's Museum of Vertebrate Zoology, 1907-1939, Social Studies of Science, 19, 387 420.
36. Star, S.L. Bowker, G. (1999) Sorting Things Out: Classification and its Consequences. Cambridge, MA : MIT Press.
37. Syndicat national de l'industrie pharmaceutique (1994) Les enjeux éthiques des stratégies des entreprises pharmaceutiques. Report of a Conference held in Paris in March 1994, Montrouge : John Libbey Eurotext.
38. Van Woert, M. (1978) Profitable and non-profitable drugs, New England Journal of Medicine, 298, 16, 903 06.
39. Van Woert, M. Chung, E., (eds) (1985) Cooperative Approaches to Research and Development of Orphan Drugs. Proceedings of a Conference, New York, 9-10 April 1984. New York : Alan R. Lissk.
40. Walshe, J.M. (1975) Drugs for rare diseases, British Medical Journal, 3, 5985, 701 02.
41. Walshe, J.M. (1988) Health Orphans: the academic viewpoint, Journal of the Royal College of Physicians of London, 22, 177 9.
42. Waring, J. (2007) Adaptive regulation or governmentality: patient safety and changing regulation of medicine, Sociology of Health and Illness, 29, 2, 163 79.
43. Wolf, A. (1994) Les orphelins de la santé. Paris : Inserm Éditions.