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Back You are here: Home Sex, Gender & Sexuality Diversity - [Archived] ISGD Mandatory register of intersex and trans people: no thanks

Mandatory register of intersex and trans people: no thanks

rejectedsmallThe proposal by an American clinician for a mandatory national register to document trans and intersex people's cases and treatment is unethical and dangerous, writes Tracie O’Keefe.

Once upon a time, a long time ago, some people where born other than strictly stereotypically physically male or female. There were other people too who behaved other than stereotypically masculine and feminine. Some of the public knew about some of these people and some of the other different people kept their business to themselves.

Of course I am talking about people now refer to as intersex, transexed, transsexual, transgendered, androgynous, without sex and gender identity and any other label they may use for themselves.

Today too, just has happened historically, some of these different people are revered and some cursed to damnation, ostracised, prevented from working, made homeless, harassed, beaten and even murdered because of who they are. Some, unable to take public or private humiliation any more, commit suicide.

The complexities of having intersex, sex and/or gender differences from the average person are relative to one’s own personal circumstances, life history and personality. No two people are the same and everyone has the right to live life the way they wish to in private. Maybe I’m an idealist and optimist but let’s see.

I believe privacy is a basic essential human right. This is why this I was horrified to hear via an e-list group I belong to that a major clinician in the field of intersex, sex and/or gender diversity is proposing that an American national register be set up to record all sex and gender diverse cases and their medical circumstances. That is of course all those who have come into contact with the medical system and undergone any kind of treatment.

Later in their posting, this clinician made an argument in favour of mandatory registration.

Well, those of you who know me can imagine that I might have formulated a response. This is it:

You are correct your proposal is very serious but also extremely alarming. It suffers from the Frankenstein syndrome.

To propose that any human being be placed on a register without their express permission is appalling and a breach of human rights.

I remember being at the HBIGDA conference in Canada in 1997 and someone telling everyone that they had all of Harry Benjamin’s records. Had they not heard of patient confidentiality? I know for a fact that some of those patients were still alive and that they would be horrified to learn that their private medical records were being touted at conferences like trophies.

I also remember my friend and colleague Alice Purnell who ran the Gender Trust in the UK for many years being asked by a psychiatrist at Charing Cross Hospital in the 1990s to help them contact all the old patients to do follow-up research. Of course Alice, who is a nurse as well as a therapist, turned them down flat and explained the moral and ethical dilemma of unsolicited intrusion into those ex-patients lives by professionals.

Your proposal falls down on many more points.

You assume that all people who transition and identify as transsexual had Gender Identity Disorder, which is not the case. You assume automatic pathology.

Clinicians do not have the right to contact patients years after treatment, unsolicited, as that would be unethical.

The relationship between a clinician and a patient needs to be confidential not a matter of public record, certainly not what medical treatments they may have undergone. Do not assume confidentiality is guaranteed and that other bodies may not be able to access those records. Let us remember in America there is no longer such a thing as privacy within government departments since 9/11.

In Australia there is a proposal that all medical records are put on an electronic national database but I have spoken to at least three computer programmers who say it would probably take them less than 30 minutes to access such records. No register is secure.

Be a realist. How long precisely do you think it will be before some extremist finds a way to publish such registers on the internet as has happened with Megan’s Law?

I and many other people who are intersex, sex and/or gender diverse have, over the years, been doorstepped and had the press take photos of us without our knowing. What effect do you think that will have on someone who is stealth?

Who do you think would publish first: the National Enquirer or Jerry Springer?

Let us remember the recent case of Caster Semenya, the runner who had her medical records leaked to the press.

Many intersex children carry the burden of having had treatments thrust upon them without permission. You now propose to out those people without their express permission. It is child abuse.

The vast majority of intersex, sex and/or gender diverse people are stealth. They are not jumping on tables at rallies, waving flags and giving interviews on television like I do. They simply live their lives in privacy and have the right to do that unfettered. I would rather go to jail than jeopardise their trust in me by placing them on such a register. This register must never happen.

One of the first rules of medicine and therapy is even when those patients are unable to care for themselves we as clinicians must care for them. Your proposal, knowing the need for privacy and the nature of the majority of these patients, would be a violation of ethics. Your desire for data collection may have noble intentions but your proposed methodology neglects patient care.

There is ample data out there concerning clinical outcomes if you sift through it and take the time to analyse it. New data is of course is always helpful but more important is ethical collection.

I hope you will reconsider your stance.

Unfortunately this person is not the only one who believes that intersex, sex and/or gender diverse people should be a matter of self-declared public record. On the same e-list a week before this proposal arrived, some members of the group talked about how they believed that people who were stealth had some kind of internalised transphobia. This of course was about people they had never met so they emotively devised the theory before proceeding to the observation.

When the transsexual woman Christina Jorgensen came out in the newspapers in the early 1950s to a world media frenzy it meant she could never put the privacy of her life back in the box. So she made her living for the rest of her life as a celebrity. There were, however, people who transitioned before her who never had a public face.

In the 1950s and 1960s it became stock standard treatment to deny transsexuals treatment if the clinician did not think they would pass as their destination sex and gender. It was a male and female only bipolar system in Western Judeo/Christian countries. Westerners considered their perspectives superior to other cultures that traditionally had extra social spaces for those not strictly male or female, or masculine or feminine.

In the 1990s intersex, trans and other sex and/or gender diverse people came out in public by the dozens in an effort to fight the prejudice and change bad laws they had endured for so many years. Many of us became all singing and dancing as we campaigned our way to better equal rights and still do today.

But many never came out and never will. Many who transition today still want the privacy of the world not knowing their business but often the queer-identified, ‘everyone exploring gender culture’ refuses to acknowledge those people’s existence or rights. In fact, many stealth people avoid the queer culture for fear of being outed and because they feel they have nothing in common with queer diversity.

Still very few intersex people declare their physical status in public. They see what is happening with them as a deeply private affair and no one else’s business but their own and their physicians. Many intersex people are struggling to deal with their situation and also have no other contact with other any other intersex people.

What if such a register simply listed people’s cases anonymously? This may not necessarily be a bad thing. However, if a register were to serve any use at all for research purposes it would need to record the person’s name, address and date of birth in order for the researchers or clinicians to be able to contact them for follow-up information.

Information in this day and age is a commodity to be stolen, bought, sold, and traded for personal gain. No register is ever secure.

Many trans people suffer horrendous consequences when their personal information and privacy is violated, sometimes leading to their murder. Many intersex people live in fear of violence, ridicule and hostility as a result of their private medical status being revealed in public.

In an ideal world we would all be out, proud and it would all be OK. But not everyone with sex and gender differences has the strength to defend themselves and we do not live in an ideal world.

The tables have turned 180 degrees. It used to be that the people who were out got stick form the people who were not out. Today, however, reverse snobbery is in place. Many people who are not out get abused by people who are out because they are stealth. I’ve even heard some campaigners say, “If they are not out why should we consider their needs?”

I never recommend to my patients whether they should be out in public or private. We talk about the benefits and drawbacks of both, but ultimately I have no moral right to dictate to them.

For intersex, trans and other sex and/or gender diverse people their personal history is no one else’s business but their own unless they choose to make it so. They deserve the right to privacy. Mandatory registers are a gross violation of that right.

Dr Tracie O’Keefe ND, DCH is a sexologist practising at the Australian Health and Education Centre in Sydney, Australia. She is the author and/or editor of several books on sex and gender diversity, the latest being Trans People in Love.

 

 

 

 

Comments   

0 #9 @STI 2011-02-21 13:40
Charter has setup a new Sexual Health clinic in Smithfield.STI Clinics Ireland promises its patients a proper Sexual Health Screen with complete Confidentiality
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0 #8 Jenny Scott 2010-10-11 23:25
I am a Transgender woman and have openly advocated for the rights of GLBTI people for the past 18 years and am in no doubt that all sorts of horrendous claims, suggestions and proposals have been made by clinicians and academics over the past 60 years. However I believe making claims re a theoretical generic 'clinician' reduces the strength of the opinion piece and its argument. Surely there are enough real examples of discrimination, etc., out there without having to invent spurious ones.
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0 #7 Katrina Fox 2010-10-11 22:23
@Jenny: There have been callouts over the years, as stated in the article, with this one being the latest.

A callout was made in this article, for example:

http://www.hawaii.edu/PCSS/biblio/articles/2005to2009/2009-clinical-implications-hormones.html

The final two paragraphs above the conclusion being the pertinent ones.

Tracie's article is an opinion piece on the problems of non-anonymous mandatory registers. There are no formal policies in place, and no organisations have made it their policy. However, given that there are clinicians out there advocating for such registers, it's worthy of a debate/discussi on. A big discussion has ensued on Facebook, featuring a range of views, similar to those already left here.
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0 #6 Jenny Scott 2010-10-11 22:08
I am having a difficulty deciding how to approach this, and I am perfectly happy to admit this maybe my own shortcoming, but I am failing to find any mention on who this 'American clinician' is or the article in which they make their proposal. Can someone please point me to them or their article?
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0 #5 Stacy 2010-10-05 01:33
In Nazi-State Finland this has already happened starting from this March. The Parliament never consulted the organisations of sexual and gender minorities about this law, it was prepared in secrecy. By comparition, they consulted the genealogist society. Someone's hobby is more important than other people's privacy.
The Nazi-State Finland is also computerizing medical records in a frenzy. Many transsexuals are thinking of leaving the country for good. I cannot find one single transsexual in this country that is favor of such treatment. Nazis marked different national groups in their registers.
I think this is part of trans-facsimila tion. You are given gender reassignment, all right, but the gender that really means something will stay in the government files. Never, ever, ever accept that!
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0 #4 Hida Viloria 2010-10-04 11:50
I agree with the author and with Diane that privacy is important to many, but as Gina pointed out, all humans are already 'registered" as male or female -- and often incorrectly when it comes to intersex babies who were surgically "made into" male or female. We allow these registries and others to exist without problem as they are useful for many reasons, particularly health care provisions. This same service should be provided to intersex people. As it is, we are allowed to be tampered with privately.

I agree with Gina that registries would provide CRUCIAL information for monitoring and ending abuse against intersex infants. My life work is educating the world that intersex people exist, and that our bodies have physical variations rather than being "social emergencies in need of medical correction," as the medical establishment has pronounced them. I do this because the overwhelming majority of intersex adults I have met who were subjected to non-consensual medical "correctment" in infancy or as children --in the form of genital surgery and/or hormone treatment -- have been very hurt by these procedures. Also, I know that I am extremely happy and lucky NOT to have undergone any attempts at "correction" or medical intervention, but instead to grow up with my healthy, unique body intact.

All humans deserve the right to decide if they want to make irreparable changes to their body that will affect their sex identity and sexual response capability. The biggest obstacle to spreading this message however, is the fact doctors do not perform follow-up on these patients and then argue that their treatments were successful, and there are no statistics available to prove that the majority of intersex people 'treated" were not happy with the outcome. Thus they ignore the adults who have come forward to contest their claims, saying they are a disgruntled minority.

What happened to Caster Semenya is not new. From 1968-2000 (during which the Olympics performed mandatory gender verification of all female athletes), many intersex women athletes were treated in exactly the same way, and ultimately barred from competition, but b/c of "privacy" their abuse happened with no public notice & they just quietly slunk away, lives ruined. While Semenya has had to personally undergo enormous difficulties b/c her situation became public record, the outrage over the attempt to exclude her & take away her right to compete gave her a chance to keep her rights/career & has given other intersex athletes a chance. The IAAF and the IOC athletic committees are, b/c of all the public outcry, currently reviewing their policies, and they have invited me to share my views as a representative for intersex women. This would not have happened in a climate of privacy and secrecy. In order to end any kind of discrimination/ prejudice, members of the targeted group must eventually stand up and say, yes, this is what I am and my needs/experienc e must be counted. While it makes us vulnerable at first, it is the only path to gaining equality and acceptance.
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0 #3 Diane 2010-10-03 18:56
I AGREE!

I personally am deathly afraid of what is happening in my country where our medical records are being computerized. I made it quite clear to my family doctor that I did not want anything in that computerized record that classed my birth anomaly and/or my infant surgery which even I, until later years, did not understand.

How dare I be subject to exposure simply because a far off clerk who has a wagging tongue and working at a desk accessing my medical history for a specialists appointment. And no, I do not think it possible for our records to be completely sealed against intrusion. Computer hackers abound and if they can steal your financial records then they darn sure can access computerized medical records.

History of an IS or a post-op TS patient especially without name or contact info might and should be available for research purposes but nothing in the record should allow anyone but the immediate patients doctor to have other more personal information; in that I am not in agreement with intersexed organizations. And why should those who have a psychological GID problem ever be linked to those who have undergone surgical IS or TS corrections? No such thing as a gender change or has the whole of research become blinded with inclusion so as to throw all under the same umbrella. It is a physical SEX issue both intersexually and transsexually...period.

Having been treated by Dr Harry Benjamin myself over 40 years ago I am now more than ever concerned that all of his records, one of which is my own, is now available to research forums. Thankfully I had changed my name in court long before the computer age and within a short time later by marriage and that might protect my being exposed to public view. Or might it not?

My intersex issue is between me and my doctor...no one else. Other times when in hospital I am asked for particulars and it had even been suggested in the presence of my husband, who was alive at the time, and the woman sharing the hospital room with me, if I would permit the hospital to do a genetic test. I refused for obvious reasons. To state I was offended by the request is not the least of the issue; I was on the edge of exposure in the presence of a stranger.

I never tell doctors or surgeons about my birth issue unless it has a direct correlation to the procedure or the treatment I am to be undergoing. None of their business. What has my sex anomaly have to do with an ingrown toenail as an example. Yet with medical computer records now becoming available even the foot doctor and his secretary might well have access to the abdominal surgeries I had many years ago simply because they have available to them my overall history passed around on a computer disc.

Should an issue of health, as per my birth anomaly, became related to a treatment in a hospital, as it has, then of course the record could be opened but only with my direct permission and treated as privately as possible and in compliance with any restriction I wish imposed on access and availability.
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0 #2 Tracie OKeefe 2010-10-02 01:06
I am fully aware of birth defect registers in Australia. The problem however is that many people who are intersex might not know they are intersex until they are older, particularly when they might come to try and have children and have problems because many intersex people are infertile. Also their primary physician often does not know they are intersex either. Testing at birth is not standard practice and is not likely to happen any time soon. This means that only certain kinds of intersex people are recognised as being so at birth and that would only give restricted figures.

Parents concerned about the wellbeing of their child are in an emotional state if their child is born obviously intersex and they can be unduly badgered by doctors to sign different documents that they and their offspring might later regret. That happend to my parents. A child is a vulnerable individual who is also entitled to privacy. Not all intersex people want to go on a register and some absolutely do not want to be on any registers whatsoever, so a mandatory reporting, which retains the person’s details to contact them later is unethical research because the child cannot give permission. It is just as unethical as doing surgery or giving unnecessary medications.

Gina, I think you are naive about the trading of information. Just recently I have become aware of one university teaching that a famous individual is intersex. While that person has never talked about such things in public their medical records were sold to a newspaper many years ago. Let’s remember the case of Lady Colin Campbell and also Amanda Lear, who issued legal proceedings against the tabloids for stating they were a sex they were not.

Twice in my life people working in government agencies have passed on information about me to the newspapers because I was public figure. I am aware of another case where the receptionist at a GP’s office outed a transsexual person because she believed they were immoral just for what they were. Bailey wrote in the Man Who would Be Queen about patients without their permission, describing them in derogatory terms. I could give you a much bigger list of similar cases but I guess you get the point.

Long-term research can be acheived by sourcing and recruiting participants through advertising. This is standard practice for researchers or re-contacting people who have gone on such a register VOLUNTARILY. It is fully compliant with ethical standards and does not require mandatory reporting of people’s names and private details without their permission and against their wishes.

I hear your frustration about the need for long-term research, and I absolutely agree that is needed, but to force people to be part of that is a breach of human rights.
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0 #1 Gina 2010-10-01 22:29
I disagree with the Author. Intersex have for many years lobbied for the mandatory reporting of Intersex births or Intersex differences later in life. Such information would be profoundly useful in lobbing against non consensual cosmetic genital surgery on infants and the routine removal of gonads in AIS individuals. There is already mandatory reporting of other differences to allow for adequate research and identifying of numbers. A number of hospitals in countries around the world currently hold such information on Intersex differences especially in Europe. ( see Fausto Stealing "sexing the body")

Currently such registers are restricted on the information they can collect and are covered by strict privacy laws. The holding of such a register would allow for one of the "golden needs" for Intersex: long term follow ups . Without such registers it has proven nearly impossible to follow up on ( read longer than fifteen years) outcomes on surgical interventions and medication regimes. bear in mind Intersex are amongst the longest of long term users of a variety of hormones but especially replacement sex hormones.

A few Notifiable disease or condition registers currently exist in Australia and new Zealand. http://www.health.gov.au/internet/main/publishing.nsf/content/cda-surveil-surv_sys.htm
http://www.moh.govt.nz/moh.nsf/wpg_index/About-notifiable+diseases http://www.health.vic.gov.au/__data/assets/pdf_file/0011/383780/notifiable_conditions_package.pdf Some such as lead poisoning or Insulin deficiency are clear examples of how such notifications can locate and help affected populations.

Intersex has for years lobbied for long term follow up studies of Intersex lives. A singular difficulty in doing such follow ups has been the lack of any information kept on Intersex by hospitals . Indeed hospitals have been so parsimonious in keeping such information, Intersex themselves, when seeking information around the circumstances of their births are routinely told no such records exist, that they have been lost, or we are simply lied to and told it is all in our mind.

The Author seems to be unaware such registers have been held by the WHO and most national health institutions for at least fifty years. There are similar registers for reporting child sex abuse. Likewise with an abused child their privacy is sacrosanct and the way registers and reporting authorities have acted that seems to have been the case . I understand stiff penalties are on offer for anyone who breaches the provisions of the medical privacy act including deregistration , fines and even time in jail.

I strongly disagree with the notion the information would be out and loud and see this as an hysterical characterizatio n of the current medical reporting registries.

Their exist in Canberra right now a register for people who take Androcur . There are only three reason allowed for the on label prescription of that drug, Hairsuitism in women, Prostrate cancer in men, and to reduce the libido of potential and convicted sex offenders. Many Trans and Intersex individuals who have needed to take that drug are listed as potential sex offenders as it is the only available on label prescription. Their details are held on the list in Canberra. I have never heard of anyone having been “outed” as a consequence of that list.
If the author is truly outraged by the keeping of such records then having a proper on label approval for trans and Intersex people prescribed Androcur rather than seeing them on such a list would seem to me to be at least as pressing as this current outrage at a situation that may arise in foreign shores and that might provide useful Information for both Intersex and Trans individuals.

There is a far more insidious list that keeps tabs on who is born male and who is born female and that is kept by the registrar of births deaths and marriages.

For the record we do not know caster Semenya’s diagnosis or if indeed she has one. We do know some information was published in the Telegraph that has never been confirmed and that if it was the author would be open to prosecution.
We might also note it was people who Knew Christine Jorgensen who outed her to the press not her medical specialists or the hospital she attended. Often forgotten is the fact that Jorgensen was not the first either to undergo the procedure , or even undergo it at the hospital she did . She was simply the most famous.

And I think that is the most salient point. We are more likely to be exposed “outed” and receive violence and discrimination from those of our immediate contacts than from afar or by a stranger.
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