{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,18]],"date-time":"2026-05-18T14:22:57Z","timestamp":1779114177716,"version":"3.51.4"},"reference-count":34,"publisher":"CAIRN","issue":"HS2","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023,5,7]]},"abstract":"<jats:p>Introduction : En 2005, pour la premi\u00e8re fois, deux activistes intersexes ont \u00e9t\u00e9 invit\u00e9es \u00e0 participer \u00e0 une conf\u00e9rence m\u00e9dicale internationale qui s\u2019est tenue \u00e0 Chicago aux \u00c9tats-Unis et qui avait pour objectif de mettre \u00e0 jour les recommandations de prise en charge m\u00e9dicale des enfants intersexu\u00e9\u00b7e\u00b7s. Au cours de cette conf\u00e9rence, une nouvelle terminologie a \u00e9t\u00e9 adopt\u00e9e pour parler des personnes intersexu\u00e9es\u00a0: les \u00ab\u00a0d\u00e9sordres du d\u00e9veloppement sexuel\u00a0\u00bb (DSD). But de l\u2019\u00e9tude : Cette recherche qualitative a pour objectif de comprendre l\u2019implication de l\u2019expertise de patient\u00b7e\u00b7s dans l\u2019\u00e9laboration de nouveaux mod\u00e8les de soins. L\u2019article prend comme cas d\u2019\u00e9tude une controverse au sein du mouvement intersexe durant les ann\u00e9es 2000 entre l\u2019Intersex Society of North America (ISNA) et l\u2019Organisation internationale des intersexes (OII). R\u00e9sultats : L\u2019analyse de la controverse entre l\u2019ISNA et l\u2019OII r\u00e9v\u00e8le une injustice \u00e9pist\u00e9mique quant \u00e0 la participation des activistes \u00e0 la conf\u00e9rence de Chicago. C\u2019est-\u00e0-dire que les savoirs des personnes concern\u00e9es ne b\u00e9n\u00e9ficient pas de la m\u00eame cr\u00e9dibilit\u00e9 que ceux des autres participant\u00b7e\u00b7s. La participation des personnes intersexu\u00e9es a, en outre, \u00e9t\u00e9 diminu\u00e9e par leur moindre acc\u00e8s aux informations que les professionnels de la sant\u00e9, notamment en raison des protocoles m\u00e9dicaux qui recommandaient le secret. Elle r\u00e9v\u00e8le aussi que les strat\u00e9gies adopt\u00e9es par certaines organisations peuvent s\u2019av\u00e9rer perdantes et sanctuariser des positions contraires aux int\u00e9r\u00eats des personnes concern\u00e9es. Ce papier appelle \u00e0 la r\u00e9flexion sur les strat\u00e9gies mises en \u0153uvre, ici dans le dialogue avec le corps m\u00e9dical. Conclusions : En analysant le cas du mouvement intersexe, cette recherche contribue plus largement aux d\u00e9bats scientifiques sur les enjeux \u00e9pist\u00e9mologiques et politiques d\u2019une participation des personnes concern\u00e9es au d\u00e9veloppement des politiques de sant\u00e9.<\/jats:p>","DOI":"10.3917\/spub.hs2.0059","type":"journal-article","created":{"date-parts":[[2023,6,19]],"date-time":"2023-06-19T08:45:21Z","timestamp":1687164321000},"page":"59-67","source":"Crossref","is-referenced-by-count":2,"title":["Enjeux et controverses quant \u00e0 la participation d\u2019activistes intersexes au Consensus de Chicago (2005)"],"prefix":"10.3917","volume":"Vol. 34","author":[{"given":"Audrey","family":"Aegerter","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"2273","reference":[{"key":"rb1","doi-asserted-by":"publisher","first-page":"f2614-f2614","DOI":"10.1136\/bmj.f2614","article-title":"Let the patient revolution begin","volume":"346","author":"Richards T.","year":"2013","journal-title":"BMJ","ISSN":"https:\/\/id.crossref.org\/issn\/1756-1833","issn-type":"print"},{"key":"rb2","isbn-type":"print","doi-asserted-by":"publisher","DOI":"10.3917\/arco.carri.2004.01","volume-title":"Sociologie de la sant\u00e9","author":"Carricaburu Dani\u00e8le","year":"2004","ISBN":"https:\/\/id.crossref.org\/isbn\/9782200262297","journal-title":""},{"key":"rb3","doi-asserted-by":"publisher","first-page":"246-254","DOI":"10.1016\/j.socscimed.2016.01.048","article-title":"The politics of health mobilization in the United States: The promise and pitfalls of \u201cdisease constituencies\u201d","volume":"165","author":"Epstein Steven","year":"2016","journal-title":"Social Science & Medicine","ISSN":"https:\/\/id.crossref.org\/issn\/0277-9536","issn-type":"print"},{"key":"rb4","doi-asserted-by":"crossref","unstructured":"4 Brown P, Zavestoski S, McCormick S, Mayer B, Morello-Frosch R, Gasior Altman R. Embodied health movements: new approaches to social movements in health. Sociol Health Illn. 2004;26(1):50-80. DOI: 10.1111\/j.1467 -9566.2004.00378.x.","DOI":"10.1111\/j.1467-9566.2004.00378.x"},{"key":"rb5","doi-asserted-by":"publisher","first-page":"2","DOI":"10.3917\/psm.162.0002","article-title":"D\u00e9mocratie sanitaire, qu\u2019est-ce \u00e0 dire\u00a0?","volume":"62ann\u00e9","author":"Arveiller Jean-Paul","year":"2016","journal-title":"Pratiques en sant\u00e9 mentale","ISSN":"https:\/\/id.crossref.org\/issn\/1286-1286","issn-type":"print"},{"key":"rb6","doi-asserted-by":"publisher","first-page":"63-89","DOI":"10.7202\/001725ar","article-title":"Comment les mouvements sociaux s\u2019imposent face aux experts. Fluidit\u00e9 des positions et mobilisation des \u00e9motions dans la lutte contre le sida en France","volume":"28","author":"Buton Fran\u00e7ois","year":"2009","journal-title":"Politique et Soci\u00e9t\u00e9s","ISSN":"https:\/\/id.crossref.org\/issn\/1703-8480","issn-type":"print"},{"key":"rb7","isbn-type":"print","doi-asserted-by":"publisher","DOI":"10.1093\/acprof:oso\/9780198237907.001.0001","volume-title":"Epistemic Injustice","author":"Fricker Miranda","year":"2007","ISBN":"https:\/\/id.crossref.org\/isbn\/9780198237907","journal-title":""},{"key":"rb8","isbn-type":"print","doi-asserted-by":"publisher","first-page":"41-52","DOI":"10.4324\/9781315212043-4","volume-title":"Varieties of Hermeneutical Injustice 1","author":"Medina Jos\u00e9","year":"2017","ISBN":"https:\/\/id.crossref.org\/isbn\/9781315212043","journal-title":"The Routledge Handbook of Epistemic Injustice"},{"key":"rb9","doi-asserted-by":"publisher","first-page":"37-48","DOI":"10.3917\/nqf.271.0037","article-title":"Intersexes\u00a0: ne pas avoir le droit de dire ce que l\u2019on ne nous a pas dit que nous \u00e9tions","volume":"Vol. 27","author":"Guillot Vincent","year":"2008","journal-title":"Nouvelles Questions F\u00e9ministes","ISSN":"https:\/\/id.crossref.org\/issn\/0248-4951","issn-type":"print"},{"key":"rb10","isbn-type":"print","doi-asserted-by":"publisher","first-page":"158-166","DOI":"10.4324\/9781315212043-15","volume-title":"Queer Epistemology and Epistemic Injustice","author":"Hall Kim Q.","year":"2017","ISBN":"https:\/\/id.crossref.org\/isbn\/9781315212043","journal-title":"The Routledge Handbook of Epistemic Injustice"},{"key":"rb11","doi-asserted-by":"crossref","unstructured":"11 Pe\u00f1a-Guzm\u00e1n DM, Reynolds JM. The harm of ableism: medical error and epistemic injustice. Kennedy Inst Ethics J. 2019;29(3):205-42. DOI: 10.1353\/ken. 2019.0023.","DOI":"10.1353\/ken.2019.0023"},{"key":"rb12","doi-asserted-by":"publisher","first-page":"143-162","DOI":"10.4000\/socio.2945","article-title":"Les sujets intersexes peuvent-ils (se) penser\u00a0?","author":"Charlebois Janik Bastien","year":"2017","journal-title":"Socio","ISSN":"https:\/\/id.crossref.org\/issn\/2266-3134","issn-type":"print"},{"key":"rb13","doi-asserted-by":"publisher","first-page":"4429-4447","DOI":"10.1007\/s11229-017-1327-x","article-title":"From \u2018Intersex\u2019 to \u2018DSD\u2019: a case of epistemic injustice","volume":"196","author":"Merrick Teri","year":"2019","journal-title":"Synthese","ISSN":"https:\/\/id.crossref.org\/issn\/0039-7857","issn-type":"print"},{"key":"rb15","doi-asserted-by":"publisher","first-page":"6-41","DOI":"10.1525\/maq.1987.1.1.02a00020","article-title":"The Mindful Body: A Prolegomenon to Future Work in Medical Anthropology","volume":"1","author":"Scheper-Hughes Nancy","year":"1987","journal-title":"Medical Anthropology Quarterly","ISSN":"https:\/\/id.crossref.org\/issn\/0745-5194","issn-type":"print"},{"key":"rb16","unstructured":"16 In: rd Epstein S. Patient groups and health movements. Hackett EJ, Amsterdamska O, Lynch ME, Wajcman J (Eds.). The handbook of science and technology studies, 3 Ed. Cambridge, MA (USA): MIT Press; 2007. p. 499-540."},{"key":"rb17","isbn-type":"print","doi-asserted-by":"publisher","first-page":"254-260","DOI":"10.4324\/9781315212043-25","volume-title":"Epistemic and Political Agency","author":"Simpson Lorenzo C.","year":"2017","ISBN":"https:\/\/id.crossref.org\/isbn\/9781315212043","journal-title":"The Routledge Handbook of Epistemic Injustice"},{"key":"rb18","doi-asserted-by":"publisher","first-page":"445-456","DOI":"10.1086\/643401","article-title":"Experiential Knowledge: A New Concept for the Analysis of Self-Help Groups","volume":"50","author":"Borkman Thomasina","year":"1976","journal-title":"Social Service Review","ISSN":"https:\/\/id.crossref.org\/issn\/0037-7961","issn-type":"print"},{"key":"rb19","unstructured":"19 Conrad P, Schneider JW. Deviance and medicalization: from badness to sickness. Philadelphia, PA (USA): Temple University Press; 1992. 352 p."},{"key":"rb20","doi-asserted-by":"publisher","first-page":"209-232","DOI":"10.1146\/annurev.so.18.080192.001233","article-title":"Medicalization and Social Control","volume":"18","author":"Conrad Peter","year":"1992","journal-title":"Annual Review of Sociology","ISSN":"https:\/\/id.crossref.org\/issn\/0360-0572","issn-type":"print"},{"key":"rb21","doi-asserted-by":"publisher","first-page":"487-504","DOI":"10.1111\/j.1467-954X.1972.tb00220.x","article-title":"Medicine as an Institution of Social Control","volume":"20","author":"Zola Irving Kenneth","year":"1972","journal-title":"The Sociological Review","ISSN":"https:\/\/id.crossref.org\/issn\/0038-0261","issn-type":"print"},{"key":"rb22","doi-asserted-by":"publisher","first-page":"237-255","DOI":"10.7202\/1025425ar","article-title":"Femmes intersexes","volume":"27","author":"Charlebois Janik Bastien","year":"2014","journal-title":"Recherches f\u00e9ministes","ISSN":"https:\/\/id.crossref.org\/issn\/1705-9240","issn-type":"print"},{"key":"rb23","doi-asserted-by":"publisher","first-page":"547-556","DOI":"10.1210\/jcem-16-4-547","article-title":"HERMAPHRODISM: RECOMMENDATIONS CONCERNING CASE MANAGEMENT","volume":"16","author":"HAMPSON JOAN G.","year":"1956","journal-title":"The Journal of Clinical Endocrinology & Metabolism","ISSN":"https:\/\/id.crossref.org\/issn\/0021-972X","issn-type":"print"},{"key":"rb24","doi-asserted-by":"publisher","first-page":"554-563","DOI":"10.1136\/adc.2006.098319","article-title":"Consensus statement on management of intersex disorders","volume":"91","author":"Hughes I A","year":"2005","journal-title":"Archives of Disease in Childhood","ISSN":"https:\/\/id.crossref.org\/issn\/0003-9888","issn-type":"print"},{"key":"rb25","unstructured":"25 http:\/\/oiiinternational.com\/705\/a-problem-of-disorder\/ O\u2019Brian M. A problem of disorder [Internet]. Chicago, IL (USA): OII Intersex Network; 2009. [Visit\u00e9 le 16\/02\/2023]. En ligne\u00a0: ."},{"key":"rb26","doi-asserted-by":"crossref","unstructured":"26 Chase C. Hermaphrodites with attitude: mapping the emergence of intersex political activism. J Lesbian Gay Stud. 1998;4(2):189-211. DOI: 10.1215\/10642684-4 -2-189.","DOI":"10.1215\/10642684-4-2-189"},{"key":"rb27","unstructured":"27 https:\/\/isna.org\/books\/chrysalis\/aap\/ Intersex Society of North America (ISNA). News release: American Academy of Pediatrics position on intersexuality [Internet]. Rohnert Park, CA (USA): ISNA\u00a0; 1996. [Visit\u00e9 le 30\/10\/2021]. En ligne\u00a0: ."},{"key":"rb28","doi-asserted-by":"crossref","unstructured":"28 Davis G. Contesting intersex: the dubious diagnosis. New York (USA): NYU Press; 2015. 240 p.","DOI":"10.18574\/nyu\/9781479891993.001.0001"},{"key":"rb29","unstructured":"29 In: Bastien-Charlebois J. \u201cOn our own terms and in our own words\u201d: the value of first person accounts of intersex experience. Organisation Intersex International (OII) Europe. #MyIntersexStory: personal accounts by intersex people living in Europe. Berlin: OII Europe\u00a0; 2019. p. 75-109."},{"key":"rb30","unstructured":"30 https:\/\/isna.org\/node\/1066\/ Intersex Society of North America (ISNA). Why is ISNA using DSD? [Internet]. Rohnert Park, CA (USA): ISNA; 2006. [Visit\u00e9 le 30\/10\/2021]. En ligne\u00a0: ."},{"key":"rb31","doi-asserted-by":"crossref","unstructured":"31 Dreger A. Twenty years of working toward intersex rights. Bioeth Action. 2018:55-73. DOI: 10.1017\/97813163 43197.004.","DOI":"10.1017\/9781316343197.004"},{"key":"rb32","doi-asserted-by":"publisher","first-page":"186-193","DOI":"10.1055\/s-2007-960679","article-title":"Die Chicago Konsensus Konferenz 2005 aus der Sicht einer Patientin","volume":"20","author":"Thomas B.","year":"2007","journal-title":"Zeitschrift f\u00fcr Sexualforschung","ISSN":"https:\/\/id.crossref.org\/issn\/0932-8114","issn-type":"print"},{"key":"rb33","isbn-type":"print","doi-asserted-by":"publisher","DOI":"10.1515\/9780822389217","volume-title":"Fixing Sex","author":"Karkazis Katrina","year":"2008","ISBN":"https:\/\/id.crossref.org\/isbn\/9780822389217","journal-title":""},{"key":"rb34","unstructured":"34 https:\/\/isna.org\/farewell_message\/ Intersex Society of North America (ISNA). Dear friends and supporters [Internet]. Rohnert Park, CA (USA): ISNA; 2008. [Visit\u00e9 le 30\/10\/2021]. En ligne\u00a0: ."},{"key":"rb35","unstructured":"35 Atelier Genre(s) et Sexualit\u00e9(s) \u2013 Institut de sociologie \u2013 Universit\u00e9 libre de Bruxelles \u2013 Belgique."}],"container-title":["Sant\u00e9 Publique"],"original-title":[],"deposited":{"date-parts":[[2024,10,22]],"date-time":"2024-10-22T15:15:16Z","timestamp":1729610116000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cairn.info\/revue-sante-publique-2022-HS2-page-59.htm?ref=doi"}},"subtitle":[""],"short-title":[],"issued":{"date-parts":[[2023,5,7]]},"references-count":34,"journal-issue":{"issue":"HS2","published-print":{"date-parts":[[2023,5,7]]}},"URL":"https:\/\/doi.org\/10.3917\/spub.hs2.0059","relation":{},"ISSN":["0995-3914"],"issn-type":[{"value":"0995-3914","type":"print"}],"subject":[],"published":{"date-parts":[[2023,5,7]]}}}