Abstract
The relationship between bioethics and advocacy is a contentious issue in bioethics and in medical contexts where advocacy and activism seek to advance the interests of particular groups or populations. This chapter raises this issue in connection with intersex, also termed disorders (or differences) of sex development. We present an interview between an intersex advocate and an academic who teaches bioethics. The interview explores what bioethics offers to intersex advocacy, by placing bioethics among a range of discourses on which contemporary intersex advocacy draws. The interview also explores what intersex advocacy offers to bioethics. The interview concludes that advocacy should be pursued when bioethics fails to achieve outcomes in medicine that are grounded in firm evidence and human rights norms.
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References
Abortion Law Reform Act. (2008). Retrieved 19 April 2018, from http://www8.austlii.edu.au/cgi-bin/viewdb/au/legis/vic/consol_act/alra2008209/
Amundson, R. (2000). Against Normal Function. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences, 31(1), 33–53. https://doi.org/10.1016/S1369-8486(99)00033-3
Angier, N. (1996, February 4). Intersexual Healing: An Anomaly Finds a Group. The New York Times. http://www.nytimes.com/1996/02/04/weekinreview/ideas-trends-intersexual-healing-an-anomaly-finds-a-group.html
Carpenter, M. (2016). The Human Rights of Intersex People: Addressing Harmful Practices and Rhetoric of Change. Reproductive Health Matters, 24(47), 74–84. https://doi.org/10.1016/j.rhm.2016.06.003
Carpenter, M. (2018). The ‘Normalisation’ of Intersex Bodies and ‘Othering’ of Intersex Identities. In J. Scherpe, A. Dutta, & T. Helms (Eds.), The Legal Status of Intersex Persons (pp. 445–514). Intersentia. https://doi.org/10.1017/9781780687704.028
Charlton, J. I. (2000). Nothing About Us Without Us: Disability Oppression and Empowerment. University of California Press.
Chase, C. (1998). Surgical Progress Is Not the Answer to Intersexuality. Journal of Clinical Ethics, 9(4), 385–392.
Criminal Law Consolidation Act 1935. (2020). https://www.legislation.sa.gov.au/LZ/C/A/CRIMINAL%20LAW%20CONSOLIDATION%20ACT%201935.aspx
Danis, M., Wilson, Y., & White, A. (2016). Bioethicists Can and Should Contribute to Addressing Racism. The American Journal of Bioethics, 16(4), 3–12. https://doi.org/10.1080/15265161.2016.1145283
Dawson, A., Jordens, C. F. C., Macneill, P., & Zion, D. (2018). Bioethics and the Myth of Neutrality. Journal of Bioethical Inquiry. https://doi.org/10.1007/s11673-018-9885-2
Dreger, A. (2018). Twenty Years of Working Toward Intersex Rights. In Bioethics in Action (pp. 55–73). Cambridge University Press. https://doi.org/10.1017/9781316343197.004
Edgerton, M. (1993). Discussion: Clitoroplasty for Clitoromegaly Due to Adrenogenital Syndrome Without Loss of Sensitivity. Plastic & Reconstructive Surgery, 91(5), 956.
Fricker, M. (2007). Epistemic Injustice: Power and the Ethics of Knowing. Oxford University Press.
Fuller, L. L. (2016). Policy, Advocacy, and Activism: On Bioethicists’ Role in Combating Racism. The American Journal of Bioethics, 16(4), 29–31. https://doi.org/10.1080/15265161.2016.1145287
Furtado, P. S., Moraes, F., Lago, R., Barros, L. O., Toralles, M. B., & Barroso, U. (2012). Gender Dysphoria Associated with Disorders of Sex Development. Nature Reviews Urology, 9, 620–627. https://doi.org/10.1038/nrurol.2012.182
Giubilini, A., & Minerva, F. (2013). After-Birth Abortion: Why Should the Baby Live? Journal of Medical Ethics, 39(5), 261–263. https://doi.org/10.1136/medethics-2011-100411
Gould, J. B. (2020). Culpable Ignorance, Professional Counselling, and Selective Abortion of Intellectual Disability. Journal of Bioethical Inquiry, 17(3), 369–381. https://doi.org/10.1007/s11673-020-09984-9
Greenberg, J. (1999). Defining Male and Female: Intersexuality and the Collision Between Law and Biology. Arizona Law Review, 41, 265–328.
Hayden, S. (2018, May 2). Feminist Activists Today Should Still Look to ‘Our Bodies, Ourselves’. The Conversation. http://theconversation.com/feminist-activists-today-should-still-look-to-our-bodies-ourselves-95503
Holmes, M. M. (2008). Mind the Gaps: Intersex and (Re-productive) Spaces in Disability Studies and Bioethics. Journal of Bioethical Inquiry, 5(2–3), 169–181. https://doi.org/10.1007/s11673-007-9073-2
Hughes, I. A., Houk, C., Ahmed, S. F., Lee, P. A., & LWPES/ESPE Consensus Group. (2006). Consensus Statement on Management of Intersex Disorders. Archives of Disease in Childhood, 91, 554–563. https://doi.org/10.1136/adc.2006.098319
Hutson, J., Grover, S., Delany, C., & Carpenter, M. (2020, June 23). Intersexion: The Birth of Ambiguity (Melbourne Medical Student Conference 2020). University of Melbourne. https://ihra.org.au/36471/intersexion-mdscx-2020/
Insight SBS. (2017, November). Insight 2017, Ep 31—Intersex. https://www.youtube.com/watch?v=tbiSmmCuiYo&list=PLs348akkootwcPaq6GscWFDoLDCzIH4cF&t=0s&index=5
Intersex Human Rights Australia. (2019). Joint Statement on the International Classification of Diseases 11 / Declaración conjunta sobre la Clasificación Internacional de Enfermedades 11 / Совместное заявление о Международной классификации болезней 11 / Déclaration commune sur la Classification Internationale des Maladies 11 / Dichiarazione comune sulla classificazione internazionale delle malattie 11 / 關於針對國際疾病分類第11版(ICD-11)的聯合聲明 / 关于针对国际疾病分类第11版(ICD-11)的联合声明 / Yhteislausunto kansainvälisestä tautiluokituksesta ICD-11 / Wspólne oświadczenie w sprawie Międzynarodowej Klasyfikacji Chorób 11 (ICD11). https://ihra.org.au/35299/joint-statement-icd-11/
Jones, T. (2016). The Needs of Students with Intersex Variations. Sex Education, 16(6), 602–618. https://doi.org/10.1080/14681811.2016.1149808
Jordens, C. (2016, 2020). Biomedicine and Society (Sydney Postgraduate Bioethics Program). The University of Sydney.
Kuczewski, M. G. (2001). Disability: An Agenda for Bioethics. The American Journal of Bioethics, 1(3), 36–44. https://doi.org/10.1162/152651601750418026
Office of the High Commissioner for Human Rights. (2019). Background Note on Human Rights Violations Against Intersex People. https://www.ohchr.org/EN/Issues/Discrimination/Pages/BackgroundViolationsIntersexPeople.aspx
Office of the Privacy Commissioner. (2018, March 2). Handling Health Information of Intersex Individuals. Office of the Privacy Commissioner. https://www.privacy.org.nz/blog/handling-health-information-of-intersex-individuals/
Peck, E., & Feder, E. K. (2017). Institutional Evils, Culpable Complicity, and Duties to Engage in Moral Repair. Metaphilosophy, 48(3), 203–226. https://doi.org/10.1111/meta.12238
Pierce, R. L. (2012). A Place for Ethics? A Place for Advocacy? The American Journal of Bioethics, 12(8), 17–18. https://doi.org/10.1080/15265161.2012.692446
Rasmussen, L. M. (2012). Patient Advocacy in Clinical Ethics Consultation. The American Journal of Bioethics, 12(8), 1–9. https://doi.org/10.1080/15265161.2012.692434
Rogers, W. (2019). Bioethics and Activism: A Natural Fit? Bioethics, 33(8), 881–889. https://doi.org/10.1111/bioe.12558
Sachedina, A. (2009). Organ Donation and Cosmetic Enhancement. In Islamic Biomedical Ethics Principles and Application. Oxford University Press. https://doi.org/10.1093/acprof:oso/9780195378504.003.0007
Scully, J. L. (2019). The Responsibilities of the Engaged Bioethicist: Scholar, Advocate, Activist. Bioethics, 33(8), 872–880. https://doi.org/10.1111/bioe.12659
Singer, P. (2001). Response to Mark Kuczewski. The American Journal of Bioethics, 1(3), 55–56. https://doi.org/10.1162/152651601750418116
Singer, P. (2013). Discussing Infanticide. Journal of Medical Ethics, 39(5), 260–260. https://doi.org/10.1136/medethics-2012-100853
Sosin, K. (2020, August 11). After Years of Protest, a Top Hospital Ended Intersex Surgeries. For Activists, It Took a Deep Toll. USA TODAY. https://www.usatoday.com/story/news/politics/2020/08/10/activists-against-intersex-surgeries-mark-lurie-win-heavy-cost/3320963001/
Third International Intersex Forum. (2013). Malta Declaration: Public Statement by the Third International Intersex Forum. https://ihra.org.au/24241/public-statement-by-the-third-international-intersex-forum/
Weddle, M. (2016). Bioethicist or Philosopher King? The American Journal of Bioethics, 16(4), 31–33. https://doi.org/10.1080/15265161.2016.1145288
Zion, D. (2019). On Beginning with Justice: Bioethics, Advocacy and the Rights of Asylum Seekers. Bioethics, 33(8), 890–895. https://doi.org/10.1111/bioe.12660
Acknowledgements
The authors thank the students in “Biomedicine and Society” at the University of Sydney, who contributed to the discussion of the issues raised by this chapter over the 15 years that the course was offered.
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Carpenter, M., Jordens, C.F.C. (2022). When Bioethics Fails: Intersex, Epistemic Injustice and Advocacy. In: Walker, M. (eds) Interdisciplinary and Global Perspectives on Intersex. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-030-91475-2_7
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DOI: https://doi.org/10.1007/978-3-030-91475-2_7
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