StopIGM.org

Press Release by StopIGM.org, 03.02.2015:

The 68th CRC session marked the first time ever the UN Committee on the Rights of the Child tackled intersex and IGM practices. In a ground-breaking move the chair grilled the Swiss Government, labeling non-consensual intersex surgery “an issue of physical integrity”, “a kind of violence to children”, and “a harmful practice”.

This first is the result of the ongoing hard work by intersex NGOs and their allies, engaging in the CRC Human Rights Mechanism and filing no less than 4 NGO reports all explicitly criticising IGM practices, resulting in an invitation for a briefing of the Committee on “Intersex Genital Mutilations on a Global Scale” just before the start of the review of Switzerland.

For 22 years, intersex people have been fighting surgical “genital corrections” on children with variations of sex anatomy, which they criticise as Intersex Genital Mutilations (IGM). For 16 years, they have invoked the UN Convention on the Rights of the Child. Since 2008 survivors engage with the United Nations human rights mechanisms, and since 2012 with the Committee on the Rights of the Child.

Now, 13 UN bodies as well as the Council of Europe are criticising non-consensual genital surgery and other medically unnecessary interventions on intersex children (CEDAW, CAT, SRH, SRT, WHO, OHCHR, UNICEF, UN Women, UNAIDS, UNDP, UNFPA, CRPD, CRC, COE). To this day, Columbia is still the only country worldwide to at least partly restrict IGM practices.

In 2012, the Opinion of the Swiss National Advisory Commission on Biomedical Ethics (NEK-CNE) was welcomed by intersex organisations around the world – however, to this day the Swiss Federal Government refuses to implement its recommendations.

The replies by the state party to the CRC Chair’s questions were clearly less than satisfactory, a sentiment also expressed by the chair in her closing remarks (>>> Transcript).

Undeviatingly, a spokesperson of the Swiss Federal Office for Justice portrayed “mental risks […] for example in the case of problems with their enrolment in school” as a reasonable justification for cosmetic genital surgery on intersex children – contrary to the recommendations of the Swiss National Advisory Commission on Biomedical Ethics explicitly criticising unnecessary genital surgery justified by “psychosocial indications” (!!!). Undeviatingly, Switzerland’s reply focused on “child registration“, “gender”, “assigned sex”, “experienced identity” and so on – while dismissing the right to physical integrity highlighted by the chair – culminating in the stick-in-the-mud claim, IGM practices would only be actually wrong if coinciding with a “wrongly assigned sex”.

While in a surprising U-turn Switzerland announced efforts to collect data on intersex surgeries, it soon became obvious so far this was once more done without consultation of intersex organisations, as they learned for the first time of these endeavours during the CRC session in Geneva.

Intersex persons and their organisations are therefore hoping for strong written Concluding Observations for Switzerland by the Committee, due tomorrow Wednesday – and for a holistic general policy to eliminate all IGM practices everywhere.

>>> 2014 CRC NGO Report “Intersex Genital Mutilations” (PDF 3.65 MB)
>>> 2015 CRC Briefing “Intersex Genital Mutilations on a Global Scale” (PDF 3.14 MB)
>>> Transcript: Intersex Q&A during the 68. Session of CRC, Geneva 2015

The international human rights NGO StopIGM.org demands the prohibition of forced genital surgeries on children and adolescents with ‘atypical’ sex anatomy and “Human Rights for Hermaphrodites too!”

Persons concerned shall later decide themselves, if they want surgeries or not, and if yes, which.

Kind regards

Daniela “Nella” Truffer, Markus Bauer
Founding members human rights NGO Zwischengeschlecht.org / StopIGM.org

Mobile +41 (0) 76 398 06 50
Mobile +41 (0) 78 829 12 60

presse_at_zwischengeschlecht.info

http://StopIGM.org

IGM on a Global Scale: 2015 Briefing for UN-CRC
• IGM: A Survivor’s Perspective • Intersex Movement History
• What are IGM Practices? • What are Variations of Sex Anatomy?
• IGM and Human Rights • Conclusion: IGM as a Harmful Practice
>>> Download PDF (3.14 MB)     >>> Table of Contents

Intersex Genital Mutilations • 17 Most Common Forms
Human Rights Violations Of Children With Variations Of Sex Anatomy
IGM – Historical Overview • What is Intersex? • How Common are IGMs?
>>> Download PDF (3.65 MB)     >>> Table of Contents

UPDATE 04.02.0215: The Concluding Observations (–> paras. 42-43) are here!!!
“[M]edically unnecessary surgical and other procedures on intersex children” are explicitly mentioned in section “E.  Violence against children”, subsection “Harmful practices”. The Committee, referring to the 2012 recommendations of the Swiss Ethics Commission (NEK-CNE), explicitly “urge[s]” Switzerland to “ensure that no-one is subjected to unnecessary medical or surgical treatment during infancy or childhood, guarantee bodily integrity, autonomy and self-determination to children concerned, and provide families with intersex children with adequate counselling and support”! THANK YOU!!!

Pressemitteilung von Zwischengeschlecht.org vom 03.02.2015:

Die 68. CRC Sitzung war eine kleine Sensation: Zum allerersten Mal überhaupt behandelte der UN-Ausschuss für die Rechte des Kindes die Themen Intersex und IGM-Praktiken. In einem bahnbrechenden Vorstoß stellte die Vorsitzende der Schweiz kritische Fragen – und kritisierte nicht-eingewilligte Intersex-OPs an Kindern als “eine Frage der körperlichen Unversehrtheit”, als “eine Art von Gewalt an Kindern”, und als “schädliche Praxis“.

Dieses Novum ist das Ergebnis langer und harter Arbeit von Intersex-NGOs und ihren Verbündeten, die sich am CRC-Menschenrechts-Mechanismus beteiligten und nicht weniger als 4 NGO-Berichte zu Kinderrechten in der Schweiz einreichten, die alle IGM-Praktiken explizit kritisierten. Gefolgt von einer Einladung des Komitees für ein Briefing zum Thema “Intersex-Genitalverstümmelungen auf der globalen Ebene” unmittelbar vor der Staatenprüfung der Schweiz.

Bereits kritisieren nun 13 UN-Gremien sowie der Europarat uneingewillige Genitaloperationen und weitere medizinisch nicht notwendige Eingriffe an Intersex-Kindern (CEDAW, CAT, SRH, SRT, WHO, OHCHR, UNICEF, UN Women, UNAIDS, UNDP, UNFPA, CRPD, CRC, COE). Bis heute ist Kolumbien weltweit das einzige Land, das IGM-Praktiken zumindest teilweise untersagt.

2012 wurde die Stellungnahme der Nationalen Ethikkommission im Bereich der Humanmedizin (NEK-CNE) der Schweiz weltweit gelobt – doch bis heute weigert sich der Bundesrat, die Empfehlungen auch umzusetzen.

Die Antworten der Schweiz auf die Fragen der CRC-Vorsitzenden in Genf waren klar unbefriedigend, was auch die Vorsitzende in einer abschließenden Bemerkung selbst festhielt (>>> Transkript).

Unbeirrt stellte der Vertragsstaat “psychologische Risiken […] zum Beispiel bei Problemen beim Schuleintritt” als angeblich “zwingende medizinische Notwendigkeit” für kosmetische Genitaloperationen an Intersex-Kindern dar – entgegen den Empfehlungen der angeführten Nationalen Ethikkommission, die “psychosoziale Indikationen” für unnötige Genitaloperationen explizit und klar kritisiert (!!!). Ebenso unbeirrt stellte der Vertragsstaat “Personenstand”, “Geschlechtseintrag”, “Geschlechtszuweisung”, “empfundenes Geschlecht” und Ähnliches ins Zentrum – bei gleichzeitiger Missachtung der von der Vorsitzenden hervorgehobenen körperlichen Unversehrtheit – gipfelnd in der ewiggestrigen Behauptung, IGM-Praktiken seien nur bei zusätzlich “falscher Geschlechtszuweisung” wirklich schlimm.

Zwar stellte die Schweizer Vertretung in einer überraschenden Kehrtwende Bestrebungen für Datenerfassung zu Intersex-OPs in Aussicht – doch offensichtlich einmal mehr ohne Konsultation der Betroffenen, die in Genf zum ersten Mal von diesen Plänen erfuhren.

Betroffene rund um den Globus und ihre Organisationen hoffen deshalb, der UN-Ausschuss für die Rechte des Kindes werde morgen Mittwoch deutliche schriftliche Empfehlungen an die Schweiz richten, und eine ganzheitliche Politik zur Eliminierung aller IGM-Praktiken weltweit vorantreiben.

>>> 2014 CRC NGO Report “Intersex Genital Mutilations” (PDF 3.65 MB)
>>> 2015 CRC Briefing “Intersex Genital Mutilations on a Global Scale” (PDF 3.14 MB)
>>> Transkript 68. Sitzung CRC: Fragen und Antworten zu Intersex, Genf 2015

Die internationale Menschenrechtsgruppe Zwischengeschlecht.org fordert ein Verbot von kosmetischen Genitaloperationen an Kindern und Jugendlichen mit “atypischen” körperlichen Geschlechtsmerkmalen sowie “Menschenrechte auch für Zwitter!”.

Betroffene sollen später selber darüber entscheiden, ob sie Operationen wollen oder nicht, und wenn ja, welche.

Freundliche Grüße

Daniela “Nella” Truffer, Markus Bauer
Gründungsmitglieder Menschenrechtsgruppe Zwischengeschlecht.org

Mobile +41 (0) 76 398 06 50, +41 (0)78 829 12 60
presse_at_zwischengeschlecht.info

http://zwischengeschlecht.org
Regelmäßige Updates: http://zwischengeschlecht.info

IGM on a Global Scale: 2015 Briefing for UN-CRC
• IGM: A Survivor’s Perspective • Intersex Movement History
• What are IGM Practices? • What are Variations of Sex Anatomy?
• IGM and Human Rights • Conclusion: IGM as a Harmful Practice
>>> Download PDF (3.14 MB)     >>> Table of Contents

Intersex Genital Mutilations • 17 Most Common Forms
Human Rights Violations Of Children With Variations Of Sex Anatomy
IGM – Historical Overview • What is Intersex? • How Common are IGMs?
>>> Download PDF (3.65 MB)     >>> Table of Contents

>>> Comment on the Q&A: Press Release by StopIGM.org, 03.02.2015

Transcript by Nella of the entire 68th CRC Intersex Q&A, Geneva 21.-22.01.2015:

Kirsten Sandberg, Chairperson of the Committee on the Rights of the Child (pictured center): (Video Segment 1, 1:00:32–1:02:23; original English, afternoon session 21.01.2015) “[Thank you. Is there any other member who’d like the floor now? …] Thank you. As I cannot see any other hands, I have a question myself on intersex children.

They were mentioned by Mr Madi [CRC co-rapporteur on Switzerland, in the List of Issues (LoI)] under discrimination, but I would also like to raise it as an issue of physical integrity or kind of violence to children or a harmful practice, because it’s seems that actually in most countries in the world children that are born with an unclear sexual – what do you call it – well, where the genitals of the child are unclear and they may develop this way or that way or they may stay unclear.

There is surgery done to the child at an early stage without proper information given to the parents, and also without the child him- or herself, of course at such an early stage, when you are a baby, being able to have a say in this matter, and also, the child, things are happening also later on, with new surgery, before the child is old enough to have a view on this or able to consent for that matter.

So I wonder, I guess you are aware of this practice, and I wonder if you are considering, or maybe considering to prohibit it actually, to not have it done without a proper consent, which is really an informed consent, and if possible by the child or then perhaps an adult, him- or herself. Exactly how to regulate it might be something that has to be discussed, but anyway the practice as it goes on today does not seem to be one which is in the best interest of these children. So I would like some comments on this.”

Ambassador Stephan Cueni, Head of the Swiss Delegation, Federal Social Insurance Office (pictured 3rd from right): (Video Segment 4, 53:18–53:38, simultaneous translation from French; afternoon session 22.01.2015) “I think we’re now coming to the last question of the first round and it’s the question of the chairperson, it’s on intersex children, and I would like to ask our colleague, Miss Gianinazzi, to answer that question. Debora Gianinazzi of the Federal Justice Office.”

Debora Gianinazzi, Swiss Federal Department of Justice and Police, Private Law Division: (Video Segment 4, 53:40–57:48, simultaneous translation from French, afternoon session 22.01.2015) “Thank you. Indeed aesthetic surgery, genital surgery performed on minors has led to sharp criticisms in Switzerland as well, because this operations are irreversible, and can cause heavy damage to the person, especially if the assigned sex then is not in keeping with the identity experienced by the person him- or herself.

In response to a parliamentary initiative in 2011 the government presented the opinion, according to which these operations designed to assign or change a sex should only be performed in case of imperative medical reasons, for example a very high risk of cancer or mental risks for small children, for example in the case of problems with their enrolment in school, so with their experience in school. So beyond imperative medical grounds infants and young children should never be subjected to operations, unless there is a ward of doctors with the approval of the parents who decide.

So the government asked the National Ethics Commission in the area of Human Health to take up a position on this issue, and this commission indeed handed out an opinion in November 2012, and rallied to the government’s position on this topic.

The commission also made recommendations to the medical corps on medical ethics on a campaign and the rights of the families in this area.

As to child registration we remain in the situation where in Switzerland, when a child is born, the child is registered in the civil register with a gender male or female, but the Commission has requested the Government to ensure that, at a later stage, the gender in the birth certificate can be amended without too many bureaucratic obstacles from the cantonal level of the civil registry.

Following this recommendation the federal authorities issued a recommendation to the cantonal civil registries to this effect, and the point of this was to raise the awareness of all officials in the civil registries and to inform them about the recommendations on the gender, and to incite them to be very careful, when recording gender and names as well. If possible a procedure for the amendment to the registry of the gender on the birth certificate should also be provided for as well as in the civil registry. So that is the current situation in Switzerland.

No, I am sorry, I actually could add something. I could clarify that in general terms the government wishes to collect information on surgery on intersex grounds. For the time being we have no clear data, the Federal Office for Statistics and the Federal Office for Public Health are now working together to develop a design for the collection of data, and the information on such surgery will allow us to gain a better appraisal of the situation.”

Kirsten Sandberg, Chairperson of the Committee on the Rights of the Child: (Video Segment 4, 57:49–59:14; afternoon session 22.01.2015) “Thank you, this is interesting to hear. I just wonder, I didn’t quite catch what you said you had done with the recommendations of the National Ethical Commission. I think some of them were passed on to the medical corps, whatever the medical people, but I think the problem of this, what you started off by saying, is that, if you require, if you have the possibility of doing this, when there are imperative medical reasons.

The doctors, who might have an interest in continuing with this, would very often find those imperative medical reasons, and you mentioned cancer or medical risks [Gianinazzi actually said “mental risks”], and we know from the information we have that this has been allegedly the case with parents who have been persuaded by doctors to have the surgery performed at an early stage.

So it doesn’t really seem strong enough, the reaction. But then I think your information on collecting more information on this is really interesting, because from the information we have nothing has changed since 2012. There is still a lot going on in the same way as before. But thank you very much for the information.”  

>>> Comment on the Q&A: Press Release by StopIGM.org, 03.02.2015

IGM on a Global Scale: 2015 Briefing for UN-CRC
• IGM: A Survivor’s Perspective • Intersex Movement History
• What are IGM Practices? • What are Variations of Sex Anatomy?
• IGM and Human Rights • Conclusion: IGM as a Harmful Practice
>>> Download PDF (3.14 MB)     >>> Table of Contents

Intersex Genital Mutilations • 17 Most Common Forms
Human Rights Violations Of Children With Variations Of Sex Anatomy
IGM – Historical Overview • What is Intersex? • How Common are IGMs?
>>> Download PDF (3.65 MB)     >>> Table of Contents

>>> CRC-Briefing: Referenced PDF (3.14 MB)

The aim of the briefing was to argue the case for recognising IGMs as a harmful practice and to promote the development of a holistic framework to eliminate all IGM practices. For the first goal we can claim a success so far with the Q&A on Intersex during the Committee’s 68th session initiated by the CRC chair, criticising early intersex surgeries as a “harmful practice” and urging Switzerland to discuss legislation.

The web version of the briefing (>>> PDF 3.14 MB) includes references and annotation.

TABLE OF CONTENTS

• IGM: A Survivor’s Perspective
• Intersex Movement History
• Intersex is NOT THE SAME as LGBT
• What are IGM Practices?
• Variations of Sex Anatomy
• IGM 1 – “Masculinising” Surgeries
• IGM 2 – “Feminising” Surgeries
• IGM 3 – Sterilising Procedures
• Overview: Further IGM Practices
• How Common is IGM?
• Countries with Less Access to Paediatric Surgery
• IGM: Historical Overview
• IGM: Human Rights Perspectives
• Conclusion: IGM as a Harmful Practice

The call for the development of a holistic policy to eliminate all IGM practices (slide 61)

>>> Reporting live from the 68th CRC Session in Geneva, 20–21 January 2015

>>> 2015: CRC condems IGM as “Harmful Practice” and “Violence on Children”

Intersex Genital Mutilations • 17 Most Common Forms
Human Rights Violations Of Children With Variations Of Sex Anatomy
IGM – Historical Overview • What is Intersex? • How Common are IGMs?
>>> Download PDF (3.65 MB)     >>> Table of Contents

>>> CRC-Briefing “IGMs On A Global Scale”: Referenced PDF (3.19 MB)
>>> Transcript entire Intersex Q&A   >>> All Videos CRC 68th Session Switzerland

Kirsten Sandberg (center) chairing the session, on the right: Swiss Gov Representatives

StopIGM.org reporting live from the 68th Session of the UN Committee on the Rights of the Child (CRC) at Palais Wilson in Geneva:

The periodic review of Switzerland regarding the UN Convention on the Rights of the Child on 21–22 January 2014 marked the first time that the Committe touched upon the topic of IGM practices. After having received two more NGO reports broaching the issue in the wake of Switzerland’s replies to the Committe’s List of Issues (LoI), one by Child Rights Netwok Switzerland as well as another thematic report by Zwischengeschlecht.org (endorsed by Swiss Self-Help Groups Intersex.ch and SI Intersexualität, and Women’s Rights NGO Terre des Femmes Switzerland), the Committe had issued a rare invitation to Zwischengeschlecht.org for a one hour Briefing on “Intersex Genital Mutilations on a Global Scale”  (>>> PDF 3.19 MB), which was also attended by representatives of the Committe on the Rights of People with Disabilites (CRPD) and the Office of the UN High Commissioner on Human Rights (OHCHR).

The briefing offered an overview on IGM practices and their histoy as well as a survivor’s perspective and an introduction to 22 years of Intersex Activism, arguing the case for recognising IGMs as a harmful practice and developing a holistic framework to eliminate all relevant non-consensual unnecessary interventions. (>>> PDF 3.19 MB) Taking place in the same conference room just before the start of the review of Switzerland, the briefing went rather well and attracted many productive questions.

What’s more, during the following review, at the very end of the first round of questions, the chair of the Committee, Kirsten Sandberg broached the topic, criticising early intersex surgery as a “harmful practice”, and asked if Switzerland was aware of the ongoing non-consensual interventions which obviously were “not in the best interest of the children concerned”, and if the state party was willing to initiate discussions about legislation to stop them?

Replying for the state party the next day, Debora Gianinazzi of the Swiss Federal Department of Justice and Police (Private Law Division) from our perspective talked much but said little. Also the usual tendency of reducing the serious human rights implications of IGMs to gender-related aspects (while ignoring e.g. bodily integrity) was showing, for example when she claimed intersex surgery had lead to stark criticism “especially” when the “wrong gender” was assigned.

Nonetheless, the state party also made some quite remarkable announcements, for example that the Swiss Government would have taken the position of only allowing medically necessary surgeries first, with the Swiss National Advisory Commission on Biomedical Ethics (NEK-CNE) in their groundbreaking 2012 recommendations merely having rallied to the Gov’s position after the fact. Furthermore, on the order of the Gov, the Federal Office of Statistics and the Federal Office of Public Health would already collaborate to facilitate data collection (though obviously without consultation of intersex organsiations). When last commenting on data collection, the Gov repeatedly claimed it was impossible and “not advisable” to collect such data (as referenced in our 2014 CRC NGO Report, p. 46).

However, on the main topics of actively discussing legislation or even taking practical steps to prevent further unnecessary surgeries, as well as regarding the implementation of the recommendations of the NEK-CNE, the silence was deafening.

Fortunately, this concern was also voiced in a concluding remark by chair Kirsten Sandberg, noting the reaction of the Gov so far would not seem strong enough considering the ongoing surgeries.

So we’re hopeful the Committe will issue strong Concluding Observations (due to be published on 4 February)!

Update 29.01.2015: The videos of the entire review (including the Q&A on IGMs) have now been made available online by ChildRightsConnect (Thanks!).
Update 31.01.2015: A transcript of the entire intersex Q&A is now available!
Update 03.02.2015: Intersex and the UN – Why is the CRC Intersex Q&A so important?
Update 04.02.215: “Harmful Practice” + “Violence against Children”: Historic CRC Statement

Intersex Genital Mutilations • 17 Most Common Forms
Human Rights Violations Of Children With Variations Of Sex Anatomy
IGM – Historical Overview • What is Intersex? • How Common are IGMs?
>>> Download PDF (3.65 MB)     >>> Table of Contents

>>> “Failed Hypospadias Repair” (PDF) [TRIGGER WARNING!!!] Revealing presentation by specialised surgeon Guido Barbagli (Arezzo, Italy) about a “growing industry”, catering to survivors of childhood cosmetic genital surgeries originally hailed as “triumphs” by feckless pedo-surgeons, but later “breaking down” as “natural evolution over time of hypospadias repair”, causing loss of sensation, lifelong pain and trouble.

>>> Hypospadias surgery: “an assault on children too young to give consent” (MailOnline 11.11.14) – Big kudos to the survivors speaking out bravely – and to MailOnline for bringing this up! However, beware of stigmatising language in the article – still a far cry, Mail! Also, will the “monitoring” announced by doctors really be anything more than just another cop-out for even more medically unnecessary, non-consensual “surgical repair”?

Intersex Genital Mutilations • 17 Most Common Forms
Human Rights Violations Of Children With Variations Of Sex Anatomy
IGM – Historical Overview • What is Intersex? • How Common are IGMs?
>>> Download PDF (3.65 MB)     >>> Table of Contents

Read moreIntersex Solidarity Day 2014 – Vigils + Open Letter, Leipzig 08.11.2014

>>> Open Letter re: Intersex Guidelines (PDF, German)   >>> more Info

Peaceful Protest + Open Letter vs. “Ja-Ped 2011”, Berlin 11.11.2011   >>> more photos

This week, Leipzig University (Germany) will host the intersex mutilators’ congress “Ja-Ped 2014” which includes the annual meeting of the “German Society for Paediatric Endocrinology and Diabetology (DGKED)”.

Participating clinicians are not only the driving force behind the daily IGMs in German speaking children’s clinics, but also behind the current “improvement for the worse” of the mutilator’s AWMF guidelines “174/001 Disorders of Sex Development”, “015/052 Female Genital Malformations”, “027/019 Prenatal Therapy of Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency”, “006/026 Hypospadias” and in 2015 “027/047 Congenital Adrenal Hyperplasia”.

Same goes for the Paediatric Surgery Jena at the University Clinic Jena-Lobeda.

StopIGM.org will facilitate 4 Peaceful Protests in Leipzig and Jena (>>> all the Dates), as well as an Open Letter to all medical societies participating in above listed guideline reviews (more here!).

Help reminding the perpetrators that it is NOT OK to mutilate defenceless children!

>>> Open Letter re: Intersex Guidelines (PDF, German)   >>> more Info

• IGM Global, Inc – Why we are targeting Paediatric Endocrinologists
• Paedo Endos: Preaching CAIS Castrations and Supposedly ‘High Cancer Risk’

Intersex Genital Mutilations • 17 Most Common Forms
Human Rights Violations Of Children With Variations Of Sex Anatomy
IGM – Historical Overview • What is Intersex? • How Common are IGMs?
>>> Download PDF (3.65 MB)     >>> Table of Contents

See also:
• Open Letter of Concern to ’53rd ESPE’ Dublin 2014
• Open Letter of Concern to ‘4th WOFAPS’ Berlin 2013
• Open Letter of Concern to ‘9th Joint Meeting’ (ESPE/LWPES) Milano 2013
• Open Letter of Concern to ‘4th I-DSD Symposium’ Glasgow 2013
• Open Letter of Concern to ’51st Annual Meeting of ESPE’ Leipzig 2012
• Open Letter of Concern to ’23rd ESPU’ Zurich 2012
• Open Letter of Concern to ‘ISHID’ Live Genital Mutilators London 2011
• Open Letter of Concern to ‘3rd EuroDSD Symposium’ Lübeck 2011
• Open Letter of Concern to ’11th EMBL/EMBO Conference’ Heidelberg 2010

Scientific “marvels” nazi-eugenicists could only dream of are widespread reality today – e.g. selective (late term) abortions of intersex foetuses “undesirable from an eugenics standpoint” (Hans Christian Naujoks 1934) because of “hereditary diseases due to abnormal predispositions, including hypospadias, pseudohermaphroditism, intersexuality, cryptorchidism and epispadias” (Baur, Fischer, Lenz 1936) – in exponentially growing rates thanks to prenatal testing. Nonetheless, public debate of such “eugenic indications” is found lacking, with occasional exceptions proving the rule mainly zeroing in on trisomy 21.

However, human rights apply to hermaphrodites too! Therefore, this blog documents some facts & figures on eugenic intersex terminations.

The following is a ranking mainly of Switzerland (although the sources used include figures from many more countries):

XXY / Klinefelter: 74% – CH Rank 3
A 2011 survey of over 20 regions, states and cities referenced and documented in the 2014 CRC Report (PDF 3.6 MB –> p. 76) finds Switzerland (74%) on rank 3, after Canada BC (88%) and Israel (85%), and followed by California and Denmark (70% each), Finland and the UK (66%) – with Germany (17%) at the rear end of the list:

“Intermediate sex”: 47% – CH Rank 2
The “Eurocat Registry (“European registration of congenital abnormalities and twins”) provides data for a global registry, tellingly named “World Atlas of Birth Defects”. The current 2nd edition collects data from 1993-1998 e.g. on a rather obscure diagnosis called “Intermediate sex”, including a chart detailing termination figures and rates (PDF 13.9 MB –> p. 184). Zurich (Switzerland) shows an overall termination rate of 47%, and in 1998 scores second with 67%  – after Glasgow in Scotland (100%), and before Finland, Barcelona in Spain and Saxony-Anhalt in Germany 3rd (50% each). (Regarding the comparatively much lower figures it’s of importance to note that not all “intermediate sex” diagnoses can be made prenatally – often also after birth no specific genetic diagnosis can be determined.)

Hypospadias: 1.58% – CH Rank 2
The intersex diagnosis hypospadias is not included under “intermediate sex” in the already referenced “World Atlas of Birth Defects”, but listed seperately (same by the way as the intersex diagnosis XO “Turner Syndrome” in the “Eurocat Registry” ), again including a table of termination rates & figures (PDF 13.9 MB –> p. 178). Zurich (Switzerland) shows a termination rate of 1.58% for the period 1992-1998, and in 1995 scores rank 2 with 6.90%, after Barcelona (Spain) with 10%. #1 scores for the other years: 1993 Tomsk (Russia) 75%, 1994 Glasgow (Scotland) 12.50%; 1996 Antwerp (Belgium) 20.00%; 1997 Basque Country (Spain)  14.29%; 1998 Heinaut (Belgium) 5.56%. (Again, the rather low figures have to be put in context with the fact that at the moment hypospadias is pretty difficult to genetically test prenatally and also difficult to spot in ultrasound examinations.)

Intersex Genital Mutilations • 17 Most Common Forms
Human Rights Violations Of Children With Variations Of Sex Anatomy
IGM – Historical Overview • What is Intersex? • How Common are IGMs?
>>> Download PDF (3.65 MB)     >>> Table of Contents

IGM on a Global Scale: 2015 Briefing for UN-CRC
• IGM: A Survivor’s Perspective • Intersex Movement History
• What are IGM Practices? • What are Variations of Sex Anatomy?
• IGM and Human Rights • Conclusion: IGM as a Harmful Practice
>>> Download PDF (3.14 MB)     >>> Table of Contents

Just before heading out to the informal meeting with ’53rd ESPE 2014′ representatives:
Claudia, Daniela, Markus, Gavan, Patrick, Richard (photo), and the Open Letter
with over a hundred additional signatories, Dublin 19.09.2014.

Last year in Milano (Italy), our peaceful vigil was kindly approached by former ESPE secretary general and then ESPE president Francesco Chiarelli (Italy), who, after making sure we were behaving civilly, suggested we should ask for a meeting with ESPE representatives during the next annual meeting in Dublin. So after finally securing tickets to Ireland, we gladly took him up on his offer (PDF). Since Chiarelli was no longer serving ESPE in an official function, he kindly forwarded our communications to the current secretary general as well as to current Irish president Hilary Hoey, who involved representatives of ESPE’s DSD Working Group and kindly set up an informal half-hour meeting in a hotel bar near the Convention Centre, which took place on September 19th after lunch.

Partcipants were Hilary Hoey (ESPE President, Dean, Faculty of Paediatrics, RCPI, Ireland), S. Faisal Ahmed (ESPE DSD Working Group, DSDnet, I-DSD, Co-Signatory of Endocrinologists’ Letter to UN Special Rapporteur on Torture, Scotland), Anna Nordenström (ESPE DSD Working Group, DSDnet, DSD-Life, Co-Signatory of Endocrinologists’ Letter to UN Special Rapporteur on Torture, Sweden), and Daniela Truffer and Markus Bauer for Zwischengeschlecht.org / StopIGM.org, also handing in the hard copy of this year’s Open Letter to ESPE.

We thank ESPE for facilitating this dialogue at rather short notice. It’s noteworthy that, while as a result of our open letters we have been able to enter in a direct dialogue with several DSD clinics, this meeting marks the first time that a medical society rose to the occasion.

The following are Markus’s memory minutes of topics broached (not necessarily in sequence), which have been cross-read and OK’d by all participants:

Faisal Ahmed likened medicine to an oil tanker which can not make abrupt maneuvres and takes time to change directions. Both Faisal Ahmed and Anna Nordenström stressed that medicine is a part of society and cannot act outside societal expectations. Anna Nordenström brought up the example of Sweden rather unexpectedly no longer proscribing castration as a requirement for transsexuals to change gender in identity documents as an example how society can change. Regarding ESPE’s position on surgery, Faisal Ahmed referred to the endocrinologists’ letter to the UN Special Rapporteur on Torture.

Markus Bauer and Daniela Truffer stressed that non-consensual, medically unnecessary treatments of intersex children constitute serious human rights violations, as documented in the open letter, and that medicine should become more aware of human rights issues and its obligations under international law, which explicitly prohibits harmful practices justified by societal pressures. Also human rights are a vital part of society. Children are not the property of their parents to have them cut as they wish, they’re human beings with innate human rights, unlike for example a chair whose legs, if deemed too long, may be shortened by a saw at its owner’s desire. While UN bodies can also be likened to an oil tanker which may take time to reach travelling speed, human rights breaches by intersex treatments are currently being increasingly recognised across the board, with future increases in recognition to be expected.

Faisal Ahmed expressed discomfort with our protests outside medical congresses “painting all doctors with the same brush.” Markus Bauer conceded that, as long as medical societies as a whole continue to advocate early surgeries, this was a political tactic to increase pressure and provoke discussions among different medical factions, asking not to take it personally.

Faisal Ahmed brought up the DSDnet Working Group 4 he’s leading and which is tasked with ensuring consultation of intersex organisations, stressing how consultation is being increasingly recognised as important by doctors. He was impressed by the long list of signatories to the Open Letter, asking if we could represent these? Markus Bauer stressed that the intersex community is diverse and not a homogneous group, and that Zwischengeschlecht.org / StopIGM.org could not speak for other groups having signed the letter, and suggested DSDnet should organise a meeting inviting all groups to discuss e.g. a memorandum of understanding of issues relevant to DSDnet, and perhaps a delegation for further contact, like this DSDnet could ensure to have actual (and not only pro-forma) consultation, but still wouldn’t have to deal with dozens of individual groups all of the time. Also, while our group would welcome to be able to continue to participate a direct open dialogue, to avoid possible misunderstandings, this would not mean we would stop protesting peacefully. Faisal Ahmed agreed to stay in touch for further dialogue, and for us to make the intentions of DSDnet Working Group 4 known to other intersex organisations.

Hilary Hoey mentioned an actual case of 46,XX CAH in Ireland with complete virilisation incl. urethral opening at the tip of the penis, stating for her, and also for the parents, it would have been difficult letting this child grow up without surgery. Daniela Truffer cautioned that it is known that some of these children will later live as males, and that it’s not legitimate to have surgery on a child to address parents’ distress. Markus Bauer agreed that raising a child with atypical genitals is not always easy, and stressed the need for offering adequate psychosocial counseling for parents and persons concerned, and for health insurances to be able to cover for it, which, according to Hilary Hoey and Faisal Ahmed, in Ireland and the UK is not a problem. Markus Bauer asked Hilary Hoey how such children are treated in Ireland, referring to reports that they get transferred to UK clinics for surgery. Hilary Hoey replied also feminising surgeries were done in Ireland by two specialised paediatric surgeons.

>>> Open Letter to ESPE with 109 Signatories    >>> Flyer for the Rallies A4 (345 kb)
>>> Photo Report: Peaceful Intersex Protest #1 kicking off, Dublin 18.09.2014
>>> Press Release 19.09. “Genital Mutilations in Irish Children’s Clinics Challenged”
>>> Press Release 10.09: “Intersex Genital Mutilations in Ireland: Info + Protests”

Intersex Genital Mutilations • 17 Most Common Forms
Human Rights Violations Of Children With Variations Of Sex Anatomy
IGM – Historical Overview • What is Intersex? • How Common are IGMs?
>>> Download PDF (3.65 MB)     >>> Table of Contents

•  Intersex Awareness Day 2015
•  Intersex Awareness Day 2016
•  Intersex Awareness Day 2017
•  Intersex Awareness Day 2018
•  Intersex Awareness Day 2019
•  Intersex Awareness Day 2023