Bioethics and Intersex"Time out". A paradigm shift on Intersex Management in the Spanish context

  1. Nuria Gregori Flor 1
  2. Silvia García Dauder 2
  3. Inma Hurtado García
  1. 1 Hospital General Universitario de Elche
    info

    Hospital General Universitario de Elche

    Elche, España

    ROR https://ror.org/01jmsem62

  2. 2 Universidad Rey Juan Carlos
    info

    Universidad Rey Juan Carlos

    Madrid, España

    ROR https://ror.org/01v5cv687

Revista:
Athenea Digital: revista de pensamiento e investigación social

ISSN: 1578-8946

Any de publicació: 2018

Volum: 18

Número: 2

Tipus: Article

DOI: 10.5565/REV/ATHENEA.1899 DIALNET GOOGLE SCHOLAR lock_openAccés obert editor

Altres publicacions en: Athenea Digital: revista de pensamiento e investigación social

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.

Referències bibliogràfiques

  • 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 efects of using online support groups and how this afects 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. http://adc.bmj.com/content/91/7/554.responses#children-are-not-disorders https://doi.org/10.1016/j.pec.2010.05.029
  • 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/S07383991(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-stillpersist-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-stillpersist-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 ‘iDisorders of sex development’ versus ‘iIntersex’”. 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, Cliford (1973). Te 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 Afecting 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’Etnografa de Catalunya , 3, 85-119.
  • Morris, Esther (2001). Te missing vagina monologue. Sojourner Women’s Health Edition. Retrieved from: http://mrkh.org/articles/the-missing-vaginamonologue-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). Te terms need to evolve [Editor letter]. Archives of Disease in Childhood. Retrieved from: http://adc.bmj.com/content/91/7/554.responses#ambiguous-terms-stillpersist-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-stillpersist-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/pediatricendocrinology/news/print/endocrine-today/%7B17caf5fa-433f-4bc6-8d124b2a299f3e1a%7D/medical-decision-making-and-the-child-with-a-dsd
  • Wainwright, David (1997). Can Sociological Research be Qalitative, Critical and Valid? Te Qalitative 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 Diferentiation Disorders , 13(3),175178.
  • Wiesemann, Claudia; Ude-Koeller, Susanne; Sinnecker, Gernot & Tyen, Ute (2009). Ethical Principles and Recommendations for the Medical Management of Diferences 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 Shifing Paradigm. Te Journal of Clinical Ethics, 9(4), 360-370.
Fuente de los datos: Dialnet