Bioethics and Intersex: “Time out”. A paradigm shift on Intersex Management in the Spanish context

Autors/ores

  • Nuria Gregori Flor Hospital General Universitario de Elche
  • S. García Dauder Universidad Rey Juan Carlos
  • Inmaculada Hurtado García Universidad CEU Cardenal Herrera

Resum

In medical literature about management of Intersex, there has been considerable debate addressing ethical issues on medical practice ―informed consent, parents’ rights to make decisions about surgery on infants or whether children should be surgically altered to suit the binary gender norms of society―. Selecting the best management for the various intersex situations can be complex, and several proposals concerning ethical principles have emerged. During the annual meeting of the Spanish support group Grapsia, we coordinated a “Bioethics and Intersex/DSD” discussion group, with the aim to identify some key elements to enhance socio-health care for people with intersex variations and their families. On the one hand, it is necessary to consider the particularities of each context and the constraints imposed by the structure and organization of each country's health systems. On the other hand, it is crucial to include insights of patients taking part in support groups and their families.

Paraules clau

Intersex, Ethics, Spanish context, Support Groups

Referències

Alcántara, Eva (2012). Llamado intersexual. Discursos, prácticas y sujetos en México (Doctoral dissertation). Universidad Autónoma Metropolitana, México.

Baechler, Marie-Noëlle (2006, 29 August). Children are not disorders [Editor letter]. Archives of Disease in Childhood. Retrieved from: http://adc.bmj.com/content/91/7/554.responses#children-are-not-disorders

Bartlett, Yvone Kiera & Coulson, Neil S. (2011). An investigation into the empowerment effects of using online support groups and how this affects health professional/patients communication. Patient Education and Counselling, 83(1), 113-119. https://doi.org/10.1016/j.pec.2010.05.029

Cabral, Mauro (Ed.) (2009). Interdicciones. Escrituras de la intersexualidad en castellano. Córdoba: Anarrés.

Canals, Josep (2002). El regreso de la reciprocidad. Grupos de ayuda mutua y asociaciones de personas afectadas en la crisis del Estado de Bienestar. Unpublished Doctoral dissertation, Universitat Rovira i Virgili, Tarragona.

Cola, Mirna & Crocetti, Daniella (2011). Negotiating normality: experiences from three Italian patients support group. Kroeber Anthropological Society, 99/100(1), 214-236.

Creighton, Sarah M.; Minto, Catherine L.; Liao, Lih-Mei; Alderson, Julie & Simmonds, Margaret (2004). Meeting between experts: evaluation of the first UK forum for lay and professional experts in intersex. Patient Education & Counselling, 54(2), 153–157. https://doi.org/10.1016/S0738-3991(03)00202-7

Cull, Melissa L. (2002). Treatment of intersex needs open discussion. BMJ, 324(7342), 919. https://doi.org/10.1136/bmj.324.7342.919

Cull, Melissa L. (2005). A support group’s perspective. BMJ, 330(7487), 341. https://www.bmj.com/content/330/7487/341

Cull Melissa L. & Simmonds M. (2010). Importance of Support Groups for Intersex (Disorders of Sex Development) Patients, Families and the Medical Profession. Sexual Development, 4(4-5), 310-312. https://doi.org/10.1159/000313889

Damiani, Durval (2006, 19 July). Ambiguous terms still persist in the Consensus [Editor letter]. Archives of Disease in Childhood. Retrieved from: http://adc.bmj.com/content/91/7/554.responses#ambiguous-terms-still-persist-in-the-consensus

Diamond, Milton & Beh, Hazel (2006, 27 July). Variations of sex development instead of disorders of sex development [Editor letter]. Archives of Disease in Childhood Online. Retrieved from: http://adc.bmj.com/content/91/7/554.responses#ambiguous-terms-still-persist-in-the-consensus

Diamond, Milton & Sigmundson, Keith (1997). Sex Reassignment at Birth: A Long Term Review and Clinical Implications. Archives of Pediatrics and Adolescent Medicine, 151(3), 298-304. https://doi.org/10.1001/archpedi.1997.02170400084015

Dreger, Alice (1999). Intersex in the Age of Ethics. Maryland: University Publishing Group.

Ford, Kristen (2001). “First, do no harm” —the fiction of legal parental consent to genital-normalizing surgery on intersexed infants—. Yale Law Policy Rev., 19(2), 469–488.

García-Dauder, (S.) & Romero, Carmen (2012). Los desplazamientos políticos de las categorías médicas: Actores, discursos, y relaciones en la controversia ‘Disorders of sex development’ versus ‘Intersex’”. In Eulalia Pérez Sedeño & Rebeca Ibáñez (Eds.), Cuerpos y diferencias (pp. 213-240). Madrid: Plaza y Valdés.

García-Dauder, (S.), Gregori, Nuria & Hurtado, Inmaculada (2015). Usos de lo psicosocial en la investigación y tratamiento de las intersexualidades/DSD. Universitas Psychologica, 14(5), 1649-1666. http://dx.doi.org/10.11144/Javeriana.upsy14-5.piti

Geertz, Clifford (1973). The Interpretation of Cultures. New York: Basic Books.

Goodall, Harold (2000). Writing the new ethnography. Lanham: AltaMira Press/Rowman & Littlefield.

GrApSIA (2015). Tratamiento y afrontamiento del SIA: Una tarea compartida. Revista Española de Endocrinología Pediátrica, 6(2), 28-34. https://doi.org/10.3266/RevEspEndocrinolPediatr.pre2015.Nov.329

Greenberg, Julie (2012). Health Care Issues Affecting People with an Intersex Condition or DSD: Sex or Disability Discrimination? Loyola of L.A. Law Review, 45(3), 849-908.

Gregori Flor, Nuria (2015). Encuentros y des-encuentros en torno a las intersexualidades/DSD. Narrativas, procesos y emergencias (Doctoral dissertation). Universidad de Valencia, Valencia.

Gregori Flor, Nuria (2016). Diagnòstic de les diferents realitats, posicionaments i demandes de la població intersexual/amb DSD (diferències del desenvolupament sexual) a Barcelona. Barcelona: Àrea de Drets de Ciutadania, Participació i Transparència. Direcció de Feminismes i LGTBI. Ajuntament de Barcelona.

Hinkle, Curtis E. (2010). ¿A quién pertenece nuestro cuerpo? In Jorge I. Raices (Comp.), Un cuerpos, mil sexos. Intersexualidades (pp. 37-41). Buenos Aires: Topia.

Kessler, Suzanne (1998). Lessons from the Intersexed. London: Rutgers Univ.Press.

Kipnis, Kenneth & Diamond, Milton (1999). Pediatric Ethics and the Surgical Assignement of Sex. In Alice Domurat Dreger (Ed.), Intersex in the age of ethics (pp. 119-137). Maryland: University Publishing Group.

Lee, Peter A.; Houk, Christopher P. ; Ahmed, S. Faisal & Hughes, Ieuan A. (2006). Consensus statement on management of intersex disorders. Pediatrics, 118(2), 488-500. https://doi.org/10.1542/peds.2006-0738

Machado, Paula Sandrine (2008). Intersexualidade e o "Consenso de Chicago". As vicissitudes da nomenclatura e suas implicações regulatórias. Revista Brasileira de Ciências Sociais, 23(68), 109-124. http://dx.doi.org/10.1590/S0102-69092008000300008

Machado, Paula Sandrine; Costa, Angelo Brandelli; Nardi, Henrique Caetano;

Vaitses Fontanari, Anna Martha; Araujo, Igor Rabuske & Knauth, Daniela Riva (2015). Follow-up of psychological outcomes of interventions in patients diagnosed with disorders of sexual development: A systematic review. Journal of Health Psychology, 21(10), 2195-2206. https://doi.org/10.1177/1359105315572454

Martin, Patricia (2003). Moving toward an international standard in informed consent: the impact of intersexuality and the Internet on the standard of care. Duke Journal of Gender Law & Policy, 9, 135-169.

Menéndez, Eduardo (1984). El modelo médico hegemónico: transacciones y alternativas hacia una fundamentación teórica del modelo de autoatención en salud. Arxiu d’Etnografia de Catalunya, 3, 85-119.

Morris, Esther (2001). The missing vagina monologue. Sojourner Women’s Health Edition. Retrieved from: http://mrkh.org/articles/the-missing-vagina-monologue-and-beyond/

Preves, Sharon (2003). Intersex and Identity. New Brunswick, New Jersey and London: Rutgers University Press.

Reis, Elisabeth (2007). Divergence or Disorder: the politics of naming intersex. Perspectives in Biology and Medicine, 50(4), 535-543. https://doi.org/10.1353/pbm.2007.0054

Sieldberg, Sophia (2006, 18 August). The terms need to evolve [Editor letter]. Archives of Disease in Childhood. Retrieved from: http://adc.bmj.com/content/91/7/554.responses#ambiguous-terms-still-persist-in-the-consensus

Simmonds, Margaret (2006, 17 August). Was Variations of Reproductive Development considered? [Editor letter]. Archives of Disease in Childhood. Retrieved from: http://adc.bmj.com/content/91/7/554.responses#ambiguous-terms-still-persist-in-the-consensus

Tamar-Mattis, Anne (2008, November). Medical decision-making and the child with a DSD. Endocrine Today. Retrieved from: https://www.healio.com/endocrinology/pediatric-endocrinology/news/print/endocrine-today/%7B17caf5fa-433f-4bc6-8d12-4b2a299f3e1a%7D/medical-decision-making-and-the-child-with-a-dsd

Wainwright, David (1997). Can Sociological Research be Qualitative, Critical and Valid? The Qualitative Report, 3(2). Retrieved from: http://www.nova.edu/ssss/QR/QR3-2/wain.html

Warne, Garry (2003). Support Groups for CAIS and AIS. Conference Proceedings: Genetic and Hormonal Basis of Sexual Differentiation Disorders, 13(3),175-178.

Wiesemann, Claudia; Ude-Koeller, Susanne; Sinnecker, Gernot & Thyen, Ute (2009). Ethical Principles and Recommendations for the Medical Management of Differences of Sex Development (DSD)/Intersex in Children and Adolescents. European Journal of Pediatrics, 169(6), 674–676. https://doi.org/10.1007/s00431-009-1086-x

Wilson, Bruce & Reiner, William (1998). Management of Intersex: A Shifting Paradigm. The Journal of Clinical Ethics, 9(4), 360-370.

Biografies de l'autor/a

S. García Dauder, Universidad Rey Juan Carlos

Prof. Titular de Universidad. Área Psicología Social.

Inmaculada Hurtado García, Universidad CEU Cardenal Herrera

Departamento Ciencias de la Educación

Publicades

03-05-2018

Com citar

Flor, N. G., Dauder, S. G., & García, I. H. (2018). Bioethics and Intersex: “Time out”. A paradigm shift on Intersex Management in the Spanish context. Athenea Digital. Revista De Pensamiento E investigación Social, 18(2), e1899. https://doi.org/10.5565/rev/athenea.1899

Descàrregues

Les dades de descàrrega encara no estan disponibles.