Keywords
DSD
patients rights
healthcare
informed consent
How to Cite
Abstract
This article aims at presenting an intersex person both as a member of a particular minority in terms of sexual health perspective, as well as in a way of legal protection of their rights, in particular within a relation to participation in the healthcare system. Analysis of available data, regarding topics of medicalisation of intersexuality, and the experience of people formingthe described minority, in relation to medical interventions interfering with their sexual health and development of sexual characteristics, allows finding a disturbing differenciacion between schemes of procedures used torwards intersexual people, and patients not recognised as posessing such traits. It is especially noticeable in terms of axiological, and practical justification of decisions about proceeding a medical intervention regarding upbringing and health development of these patients. Said analysis presents possible risk areas, within which a decision regarding an approval of such intervention might be regarded as a discriminatory infringement of patients rights. Among others, particular examination has been conducted within topics of violations of patients autonomy and body integrity, infringements of the mechanisms of providing an informed consent, and rights regarding access to ones medical records. Due to the complex nature of said asnalysis, and multiple intertwined aspects of said problem, regarding a legal study of regulations adressing the presented issues, this part of article consists of mostly theorhetical examination and discussion about possible violation of intersex patients rights, as well as general oligations, and ethics binding medical personnel proviging care for them.
References
J. Abdulcadir, , L. Catania, M. J. Hindin, L. Say, P. Petignat, O. Abdulcadir, Female Genital Mutilation, “Obstetrics & Gynecology”, 128(5), 2016
S. F. Ahmed, S. Morrison, I.A. Hughes, Intersex and gender assignment; the third way? “Archives of Disease in Childhood”, 9/2004 Sep. (89)
K. Bajszczak, M. Szarras-Czapnik, J. Słowikowska-Hilczer, Zaburzenia rozwoju płci — nowa nomenklatura oraz wytyczne w postępowaniu terapeutycznym, „Seksuologia Polska” 2014, t. 12, nr 2
K. Bangalore Krishna, C. Cinnatti, P. Hoebeke, A.-F. Spinoit, R. De Castro, P. A. Lee, Individualized care for patients with intersex (differences of sex development): Diagnosis and treatment of aphallia, “Journal of Pediatric Urology”, 7.IX.2023,
K. Bangalore Krishna, C. P. Houk, P. A. Lee, Pragmatic approach to intersex, including genital ambiguity, in the newborn, “Seminars in Perinatology”, vol. 41, Issue 4, 2017
E. Barg , M. Tokarska , B. Wikiera , B. Kosowska, Postępy w diagnostyce wrodzonego przerostu kory nadnerczy, “Advances in Clinical and Experimental Medicine” 2003, 12, 4.
M. Bauer, D. Truffer, D. Crocetti, Intersex human rights, “The International Journal of Human Rights”, 24:6, 2020
R. C. Berg, E. Denison, A Tradition in Transition: Factors Perpetuating and Hindering the Continuance of Female Genital Mutilation/Cutting (FGM/C) Summarized in a Systematic Review, “Health Care for Women International”, 34:10, 2013
A. W. Berry, S. Monro, Ageing in obscurity: a critical literature review regarding older intersex people, Sexual and Reproductive Health Matters, 30:1, 2022
M. Blackless, A. Charuvastra, A. Derryck, A. Fausto-Sterling, K. Lauzanne, E. Lee, How sexually dimorphic are we? Review and synthesis, “American Journal of Human Biology” (2000), 12
M. Boratyńska, P. Konieczniak, Prawa pacjenta, Warszawa, 2001
M. Boratyńska, Dysfunkcjonalność ochrony praw pacjenta małoletniego. Część 1: Reprezentowanie interesów i prawo do informacji, „Annales UMCS” vol. LXX, 1/2023
C. Carpenter, K. Makhubu, L. Moche, An invisible public health crisis: the forced normalization of intersex people,”Harvard Public Health Review” 2021; 30
M. Carpenter, The human rights of intersex people: addressing harmful practices and rhetoric of change, “Reproductive Health Matters”, 24:47, 2016
M. Carpenter, The “Normalization” of Intersex Bodies and “Othering” of Intersex Identities in Australia, “Bioethical Inquiry” 15, 2018
R. Cleminson, F. V. Garcia, Sex, Identity and Hemaphrodites in Iberia, 1500-1800, Routledge, Oxon 2016
M. Cools, A. Nordenström, R. Robeva, J. Hall, P. Westerveld I in.; COST Action BM1303 working group 1, Caring for individuals with a difference of sex development (DSD): a Consensus Statement, “Nature Reviews Endocrinology” 2018 Jul;14(7)
J., Daaboul, J. Frader, Ethics and the Management of the Patient with Intersex: A Middle Way. “Journal of Pediatric Endocrinology and Metabolism”, 14(9), 2001
G. Davis, The Social Costs of Preempting Intersex Traits, “The American Journal of Bioethics”, 13:10, 2013
A.D. Dreger, "Ambiguous sex"--or ambivalent medicine? Ethical issues in the treatment of intersexuality, “Hastings Center Report” 1998 May-Jun; 28(3)
B. D. Earp, S. Johnsdotter, Current critiques of the WHO policy on female genital mutilation, “International Journal of Impotence Research”, Mar;33(2)/2021
K.-K. Ford, “First, Do No Harm”: The Fiction of Legal Parental Consent to Genital-Normalizing Surgery on Intersexed Infants. “Yale Law & Policy Review”, 19(2), 2001.
J. Garland , S. Slokenberga, Protecting the Rights of Children with Intersex Conditions from Nonconsensual Gender-Conforming Medical Interventions: The View from Europe, “Medical Law Review”, vol. 27, Issue 3, Summer 2019
J. Garland, Sweden, [w:] J. Scherpe, A. Dutta, & T. Helms (Eds.), The Legal Status of Intersex Persons, 2018 Intersentia.
D. C. Ghattas (tłum. M. Rakita), Ochrona osób interpłciowych w Europie: podręcznik dla prawników i decydentów, OII Europe, Fundacja Interakcja, 2019
J. Greenberg, International Legal Developments Protecting the Autonomy Rights of Sexual Minorities: Who Should Determine the Appropriate Treatment for an Intersex Infant?. [w:] Sytsma, S. (eds) Ethics and Intersex. International Library of Ethics, “Law and the New Medicine”, vol 29, 2006
J. Holocher, "Małe rozwiązanie", "duże rozwiązania", godność i wolność człowieka... : zasady konstytucyjne w sporze o prawa osób transseksualnych w orzecznictwie Federalnego Sądu Konstytucyjnego Niemiec, „Prawo i Medycyna” vol. 70, 1/2018
E. M Horowicz, Intersex children: Who are we really treating? Medical Law International, 17(3) , 2017., 183–218
L. Hunter, A. Zavros-Orr, A. Brömdal, K. Hand, B. Hart, Intersex awareness and education: what part can health and physical education bodies of learning and teaching play?, “Sport, Education and Society”, 28:9, 2023
E. Kelly, & P. J. A. Hillard, Female genital mutilation. “Current Opinion in Obstetrics and Gynecology”, 17(5), 2005
P. Konieczniak, Czynność lecznicza i jej cel. Zagadnienie celu w prawie medycznym, [w] System Prawa Medycznego t. 2 cz. 1, red. nacz. E. Zielińska, Wolters Kluwer Warszawa 2019
P. Konieczniak, Ograniczone „prawo” małoletniego pacjenta do informacji, [w:] System Prawa Medycznego t. 2 cz. 1, red. nacz. E. Zielińska, Wolters Kluwer Warszawa 2019.
U. Lampalzer, P. Briken,K. Schweizer, Psychosocial care and support in the field of intersex/diverse sex development (dsd): counselling experiences, localisation and needed improvements, “International Journal of Impotence Research” 33, 2021
E.M. Leidolf, M. Curran, Scout, J. Bradford, Intersex mental health and social support options in pediatric endocrinology training programs, “Journal of Homosexuality” 2008;54(3)
D. Lewandowska, Androgyn czy hemafrodyta? Studium nad hemafrodytyzmem w źródłach antycznych, wyd. Naukowe Sub Lupa, Warszawa 2019
E. Leye , N. Van Eekert, S. Shamu, et al. Debating medicalization of Female Genital Mutilation/Cutting (FGM/C): learning from (policy) experiences across countries. “Reproductive Health” 16, 158 (2019)
L. Liao, Medical and Psychological Controversies. W: Variations in Sex Development: Medicine, Culture and Psychological Practice Cambridge: Cambridge University Press, 2022,
L. Lin, & J. Achermann,. Disorders of sex development, W: S. Kehoe, L. Chitty, & T. Homfray (Eds.), Reproductive Genetics (Royal College of Obstetricians and Gynaecologists Study Group, pp. 15-34). Cambridge: Cambridge University Press, 2009
U. Liszewska, A. Dominiak, M. Kurowska, Zaburzenia rozwoju płci – współczesne strategie interwencji terapeutycznych, postępowań prawnych i ich konsekwencje psychologiczno-seksuologiczne, „Psychoseksuologia”, 4/2018
T. Lundberg, K. Roen, C. Kraft, P. Hegarty, How young people talk about their variations in sex characteristics: making the topic of intersex talkable via sex education, “Sex Education”, 21:5, 2021
M.P. Martinez, H. Elbardisi, A. Majzoub, M. Arafa,. Klinefelter Syndrome. W : M. Arafa, H. Elbardisi, A. Majzoub, A. Agarwal, (eds) Genetics of Male Infertility. Springer, Cham, 2020
B. Molina-Gallego, L. Mordillo-Mateos, G. M. de Corral, S. Gómez-Cantarino, B. Polonio-López, M. I. Ugarte-Gurrutxaga, Female Genital Mutilation: Knowledge and Skills of Health Professionals, “Healthcare” 2021, 9
S. Monro, M. Carpenter, D. Crocetti, G. Davis [w:], Intersex: cultural and social perspectives, “Culture, Health & Sexuality”, 23:4, 2021
P.D.E. Mouriquand, D.B. Gorduza, C.-L. Gay, H.F.L. Meyer-Bahlburg, L. Baker, L.S. Baskin, I in. Surgery in disorders of sex development (DSD) with a gender issue: If (why), when, and how?, “Journal of Pediatric Urology”, 12:3, 2016
P. Mulongo, C. Hollins Martin, S. McAndrew,. The psychological impact of Female Genital Mutilation/Cutting (FGM/C) on girls/women’s mental health: a narrative literature review, “Journal of Reproductive and Infant Psychology”, 32(5), 2014
A.J. Neuman Wipfler, Identity Crisis: The Limitations of Expanding Government Recognition of Gender Identity and the Possibility of Genderless Identity Documents, “Harvard Journal of Law and Gender”, 39 2016
C. E. Orr, Exorcising Intersex and Cripping Compulsory Dyadism, Institute of Feminist and Gender Studies Faculty of Social Sciences University of Ottawa, 2018
S. E. Preves, Negotiating the Constraints of Gender Binarism: Intersexuals’ Challenge to Gender Categorization, “Current Sociology”, 48(3), (2000).
D. Rogowska - Szadkowska, T. Niemiec, Obrzezanie kobiet – nowy problem w praktyce lekarza ginekologa w krajach Unii Europejskiej?, “Ginekologia Polska” 2009/80
K. Sandberg, Intersex Children and the UN Convention on the Rights of the Child. [w:] J. Scherpe, A. Dutta, & T. Helms (Eds.), The Legal Status of Intersex Persons 2018.
B. Sándor, (tłum. J. Kata, M. Przepiórkowski), Jak zapobiegać i przeciwstawiać się dyskryminacji oraz przemocy wobec dzieci i młodzieży LGBTI+?, Stowarzyszenie Lambda Warszawa, 2021
L. Sax, How common is lntersex? A response to Anne Fausto‐Sterling, “Journal of Sex Research”, 39(3), 2002
G.I. Serour, Medicalization of female genital mutilation/cutting, “African Journal of Urology”, vol. 19, Issue 3, 2013
H. Smith, K. Stein, Psychological and counselling interventions for female genital mutilation, “International Journal of Gynecology & Obstetrics”, 136, 2017
R. Sparrow, Gender Eugenics? The Ethics of PGD for Intersex Conditions, “The American Journal of Bioethics”, 13(10): 2013
M. Świderska, Zgoda pacjenta na zabieg medyczny, Toruń 2007
A. Tamar-Mattis, Exceptions to the Rule: Curing the Law's Failure to Protect Intersex Infants, 21 “Berkeley Journal of Gender, Law & Justice” 59 (2006)
J. Woweries, Intersex: Medical Measures on the Test Bed, W: E. Schneider & C. Baltes-Löhr (Ed.), Normed Children: Effects of Gender and Sex Related Normativity on Childhood and Adolescence, Bielefeld: transcript Verlag, 2018.
L. Zeeman, and K. Aranda, A Systematic Review of the Health and Healthcare Inequalities for People with Intersex Variance, “International Journal of Environmental Research and Public Health” 17(18), 2020
S. Zobel, Intersex/Gender-Related Constitutiveness: Specific Realities, Specific Norms, W: E. Schneider & C. Baltes-Löhr (Ed.), Normed Children: Effects of Gender and Sex Related Normativity on Childhood and Adolescence, Bielefeld: transcript Verlag, 2018
Akty prawa obcego, opracowania i rezolucje
Annual Review Of The Human Rights Situation Of Lesbian, Gay, Bisexual, Trans And Intersex People In Europe And Central Asia – ILGA Europe, Bruksela, 2023
A long way to go for LGBTI equality, Luxembourg: Publications Office of the European Union
Assembly/AU/Dec.737(XXXII) Page 1 32nd Ordinary Session of the Assembly, 10- 11 February 2019, Addis Ababa, Ethiopia Decision On Galvanising Political Commitment Towards The Elimination Of Female Genital Mutilation In Africa
End FGM – European Network, Equality Now, Female Genital Mutilation/Cutting: A Call for a Global Response, 2022
European Parliament resolution of 7 February 2018 on zero tolerance for Female Genital Mutilation (FGM) (2017/2936(RSP))
European Parliament resolution of 12 February 2020 on an EU strategy to put an end to female genital mutilation around the world (2019/2988(RSP))
Fourth Ordinary Session Of The Specialised Technical Committee On Social Development, Labour And Employment (Stc-Sdle-4) 04-08 April 2022 Addis Ababa, Ethiopia - Saleema Initiative Africa Union Initiative On Eliminating Female Genital Mutilation Programme And Plan Of Action 2019 – 2023
L. Holzer, NON-BINARY GENDER REGISTRATION MODELS IN EUROPE Report on third gender marker or no gender marker options, ILGA-Europe, (2018)
Human rights and intersex people - Issue paper published by the Council of Europe Commissioner for Human Rights, Council of Europe, 2015
“I Want to Be Like Nature Made Me” - Medically Unnecessary Surgeries on Intersex Children in the US, 25.07.2017r., interACT & Human Rights Watch
Intersex Society of North America, Clinical Guidelines for the Management of Disorders of Sex Development in Childhood - Consortium On The Management Of Disorders Of Sex Development, 2006
Komunikat Komisji Do Parlamentu Europejskiego, Rady, Europejskiego Komitetu Ekonomiczno-Społecznego I Komitetu Regionów Unia równości: strategia na rzecz równości osób LGBTIQ na lata 2020-2025, Bruksela, dnia 12.11.2020 r. COM(2020) 698 final
Office of the High Commissioner for Human Rights, Free & Equal Campaign Fact Sheet: Intersex (2015)
Parliamentary Assembly of the Council of Europe, Resolution 2191 (2017). Promoting the human rights of and eliminating discrimination against intersex people, Doc. 14404, 25 September 2017
Parliamentary Assembly of the Council of Europe, Resolution 2191 (2017). Promoting the human rights of and eliminating discrimination against intersex people, Res. 2191, 12 October 2017,
Personenstandsgesetz vom 19. Februar 2007 (BGBl. I S. 122), das zuletzt durch Artikel 3 des Gesetzes vom 17. Juli 2023 (BGBl. 2023 I Nr. 190)
United Nations General Assembly, Resolution adopted by the General Assembly on 20 December 2012 [on the report of the Third Committee (A/67/450 and Corr.1)] 67/146. Intensifying global efforts for the elimination of female genital mutilations - A/RES/67/146
The Yogyakarta Principles Plus 10, Additional Principles And State Obligations On The Application Of International Human Rights Law In Relation To Sexual Orientation, Gender Identity, Gender Expression And Sex Characteristics To Complement The Yogyakarta Principles, As adopted on 10 November 2017, Geneva
World Health Organization. Female genital mutilation: an overview. World Health Organization, 1998
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