Intersex Human Rights Australia

DYLAN
Thank you all for joining us today and thank you again for your participation in this seminar. I’ve heard a lot of positive feedback from the students who were looking forward to this and I think we will get a good amount of students engaging in it.

I’ll just start by introducing myself, my name is Dylan [Dye-lan] – it’s a little bit confusing that it’s spelt the same as Dylan, but it’s pronounced Dye-lan – and I’m one of the third years doing medicine at Melbourne Uni, obviously.

I have been unfortunate in some ways that I have missed my paediatric rotation so I haven’t been able to go to Royal Children’s Hospital and see a lot of paediatrics. But it was quite successful doing it online as well, they did a really good job, the organising team.

Now I’ll just introduce, I know that some of you know each other. So, we’ve got John Hutson who is a professor in paediatric surgery at the Royal Children's. Professor Sonia Grover who is a professor in child and adolescent gynaecology, again, at the Royal Children’s Hospital. Professor Clare Delany who’s a clinical ethicist based at RCH as well as at the Peter MacCallum Cancer Centre. And then Mr Morgan Carpenter, who is with the IHRA as an intersex advocate.

Now, I’ll just quickly run through the session format. I know I have given you the document that is quite extensive as to how it is going to run. I will firstly begin the session by introducing you all and introducing, um sorry, doing an acknowledgement of country as well. Then I’ll basically hand directly over to you Clare. The MDSC has given you a statement to read out if that’s ok. And then -

CLARE
Yes, can I just check this statement. Is everyone happy with this statement? I’m not quite certain. With this statement I am saying that the MDSC organising team would like to explicitly make it clear that intersex variation is normal and the grey zone we are discussing is decision making for babies born with ambiguous genitalia and we will use the term intersex in the discussion.

So, how do you feel about that? Is everyone happy with that introduction?

SONIA
Um, not entirely, given that we have so many of our patients who are unhappy with that expression. So I think it would be worth acknowledging that this is not an expression that everyone is comfortable with.

DYLAN
Ok, yep. I am happy for you to make changes in your professional opinion as you wish .

CLARE
Morgan?

MORGAN
Thank you for raising this. I was expecting this to be raised immediately. In my discussions with Dylan and his colleagues, I have already identified that you are likely to raise issues with the statement, so this is not unanticipated.

The position of Intersex Human Rights Australia is that people with intersex variations use a wide variety of different language and terms, often in response to stigma and misconceptions and in response to what individuals are taught, including being taught by clinicians and parents.

CLARE
Ok so, perhaps what I will do, because this obviously will be a good discussion point, even the labels that are used, and we might get to that, and what they signify.

But I think I might just soften that or at least open it up to say that the term intersex is one term which is used to encompass variations. Um and we will discuss it. There might be others that other people prefer to use, for a range of reasons. How about that?

SONIA
Sounds good.

CLARE
Ok. And that can be… So I’ll make that statement.

Then the next thing that I thought that we could do is start with a – with some definitions and the scope of intersex conditions, if you like, or conditions which come under that broad umbrella.

And so, who - would Sonia, is Sonia best placed to have a go at that, or John? Or, what do you reckon, a bit of both?

JOHN
I’m easy.

CLARE
Why don’t we start with Sonia, and then I’ll go to John, to talk about them, and then I can go to Morgan.

Now Morgan, do you want to be involved in the definitional aspect there?

MORGAN
Um, I. Perhaps, yes.

CLARE
Mm-hm, yeah.

MORGAN
We use a human rights definition rather than a clinical one.

CLARE
So it would be good to sort of show, to have all of those definitions on the table.

MORGAN
Yes.

CLARE
Yes.

And then, after that, there is a series of questions here but I was thinking that, given it’s a group of students who may not know anything much about this, whether we first of all say what sort of conditions are there, how do they manifest, and then what are the types of treatments that are currently offered, or y’know historically offered, or try and get out what treatments are done? And then the idea of that is to say that some treatments seem uncontroversial, perhaps, and other treatments are in a grey zone where there’s more decisions and people will have different perspectives. How about that?

So I’m going to rely first of all on John and Sonia to set out those treatments, then we will move into areas where we may have different views about those treatments. I’m mindful that...

MORGAN
Can I just ask?

CLARE
Yes, sure.

MORGAN
It seems to me that you’re changing the structure of the discussion quite considerably and I would, I respectfully request that you actually stick to the proposal in terms of the plan. There is some discussion in point... under the Principles of Decision Making section point 1C, there is a question there about options for surgical intervention, which of course omits hormonal intervention and other non-surgical interventions. I think rather than just completely rewriting the brief at this point, this close to the event happening, it would be better that we stick to the plan.

CLARE
Yeah, look, that’s fine. I’m just really mindful having spoken with Dylan earlier that we want to get, just as an overview of their conditions, and sure we can go to the treatments, which is part C, which is why I was bringing up part C earlier. Just because Part A is going straight to the grey zone without mentioning the spectrum.

DYLAN
Yeah, I agree with that, Clare. We need to make it clear to the students that there is quite a large spectrum like you said. We want to make it clear that not everything is completely ambiguous and that it is that spectrum from mild all the way up to more ambiguous. And it is probably a good idea to educate them on that before going into the grey zone and yeah of what is done.

CLARE
We won’t spend too long there. And I know these points are really important to get out and I am not going to avoid them. I just wanted to set the scene a little bit. Because there was sort of a deep dive straight away without giving students a chance to have an overview.

MORGAN
Yeah, I’m just thinking it’s not necessarily helpful to go into a deep dive into surgery right in the beginning.

CLARE
That’s ok, well we won’t do that. I’ll take your point on that. So we won’t go straight into what treatments are offered, but how do they manifest and I will flag that we will get to the sorts of treatments.

MORGAN
I would point out that the students themselves have come up with this statement about intersex variations being normal. So I suggest that you think about how you can talk about manifestations while respecting that statement.

CLARE
Sure. Yeah. I guess normal manifests in all sorts of ways too. If that’s what you mean.

MORGAN
Ideas of what normal is are often socially constructed.

CLARE
Yep, yep.

SONIA
agreed.

CLARE
Ok. So the point – how are we going for time , we have another 10 minutes.

DYLAN
That’s right, yes.

CLARE
So the first point, can I just be clear about this, the first point is about our role as doctors in providing information and the role of parents. Now, if I went straight to that, the question is, “What do you say to parents when the biological sex of the baby is unclear?”

DYLAN
Yes, so that question is… So firstly, discussion point 1 and 2, so discussion point 1 is about what the parent’s influence in the decision making is and discussion point 2 is about the human rights of the child.

With discussion point 1 and 1A particularly, we want an insight into what you as a doctor would say because quite often the first question you get asked as an obstetrician, especially if you’re doing a cesarean, is, “Is it a boy or a girl?” We want to know, when it’s not so clear, how you actually answer that question with being sensitive obviously and educated as well.

CLARE
Ok, so, Sonia and John, are you ok to answer that question. What would you say when a baby is born where the...

SONIA
I think we also need to acknowledge that these days many people know the gender of the baby before it is born. Therefore, a baby that has an appearance different to what was expected is also, is probably just as common these days as a baby where the very choice of girl or boy, where it is not clear, and um, so, and given that we have moved away from things being as clear cut as that.

You know, my opening line is that, “You’ve got a gorgeous baby, it’s breathing beautifully. There seems – I can’t answer your question at the moment, there seem to be some challenges that we need to think about.” Um.

CLARE
So, that’s an opening.

John?

JOHN
The secret is that you’ve got to make sure that they understand normal sexual development and the child’s, the sexual development if this particular baby is incomplete.

We haven’t figured out yet what the real gender is.

And that doesn’t mean that we won’t be able to and that we won’t be able to fix it.

And I agree with Sonia, that the most important thing is to make them understand that they’ve otherwise got a completely normal baby, usually. Once they’ve got that in perspective, it’s not so difficult for them to cope with the fact that the anatomy is not quite right.

SONIA
Not quite typical.

MORGAN
Can I just raise a couple of concerns here. I have just heard words about development being incomplete, about not being normal, and about “fix it”.
And the student’s themselves have come up with this language about intersex variation being normal.

So what you’re saying here is something that is quite at variance with their framing of the discussion.

SONIA
So I think...

MORGAN
This language about being incomplete is particularly interesting. There’s quite a long history of language about being incomplete or unfinished, which presupposes that clinicians can finish or complete something.

CLARE
Sonia? Oh, sorry, John?

JOHN
And the truth is sometimes they can do that. But not always.

SONIA
I think the… There was a - the challenges that families face, and cultural components of those challenges, and how the multidisciplinary team responds to those challenges would be a nice, and we’ve had a recent example of that, that might be worth bringing up as a case for discussion to really highlight, I think and I hope, how things are… The approach that is taken these days. Which will make Morgan and the medical students feel more comfortable.

MORGAN
I would encourage you to acknowledge, as you do in your recent book, that you can speak for the particular centre where you are practicing, but that practices around Australia – as well as internationally – are considerably different.

JOHN
Yeah, we agree with that.

CLARE
I think that’s an important point to make. And I think it will be, what’s come out there is that there is really different language used about the presentation of a baby. And I’m picking up here that language really matters.

So on the one hand “not quite right” and “need to fix it” is a type of language that I can hear suggests that it’s not normal and so we’ve moved away from intersex variation being a normal variation.

What I’d like to get to, also, though, which we do get to, is what type of treatments are available, or if any should be done and on what basis are those treatments or interventions done?

SONIA
Can I suggest that we divide that into gonadal surgery, and into genital surgery, and then hormonal treatment. So that we cover the three as distinct things. As three distinct areas.

CLARE
Yep.

MORGAN
Ok, here I need to challenge you again because this panel is a panel of myself, and I’ve got a kind of bioethics and human rights background, we have Clare who is a bioethicist, and we have two surgeons. And we have nobody here with any kind of psychosocial background or expertise, for example psychiatry, psychology, social work.

And here we can see how we’ve gone straight from this conceptualisation of intersex variation being normal, to, again, there being surgical or hormonal solutions to a problem. And I think that’s predicated by the composition of the panel.

SONIA
Morgan, I think we’ve moved quite a long way. I spent more of my time talking to patients than I do operating.

JOHN
Me too.

SONIA
And the example of the case that I was going to raise was not going to be voicing just my opinion but was going to be trying to recap the opinion of the multidisciplinary team, which included a wide range of people at that meeting and it was a decision not for surgery, in that case.

And you know, I think you’re aware that the removal of gonads now is for non-functioning, non-fertile producing gonads, which carry a cancer risk of anywhere up to 30 or 50%. So we are not, you know, that is…

I can’t swear for what all of Australia is doing and I can’t swear for what was done 50 years ago because what we knew 50 years ago was substantially less. And so -

NATASHA
I’m sorry to interrupt but I want to remind you that in 3 minutes we will be going live and getting ready to, I will be handing over for you guys to host, so you might want to wrap up your operation there.

DYLAN
Not a problem, thank you.

So I just want to let you all know that at 11.55 the session automatically expires. So we will also be looking to kind of conclude at 11.54.

Can I also ask if it’s ok that this be recorded? Does anyone have any...

ALL
That’s fine

DYLAN
And just also to let you know that I’ve got a representative on the inside who is sitting in as a student, on behalf of the students, and they will be helping select the questions that the students have. There will be a Q and A after the panel. That representative will be approving questions that are, obviously, respectful or appropriate. We don’t get any inappropriate questions come through, hopefully.

MORGAN
If I might just quickly comment. Sonia, I think you’ve misconstrued my point. My point is that you’ve leapt into treatment being surgical treatment and you’ve presented three scenarios, gonadal surgery - they weren’t all surgical - gonadal surgery, genital surgery and hormonal treatment.

But again, those all presuppose a need for treatment and two of those cases are surgery.

SONIA
Morgna, I don’t actually predispose...

MORGAN
Now I’ve also got some information published from Queensland that shows that surgery is still routine in infancy in cases of complete AIS, so there is a lot of variation in Australia and I…

SONIA
I haven’t got a wand, I can’t fix it, Morgan. I’d love to.
[Laughs]

JOHN
[Laughs]

MORGAN
Just be aware that you are not representing the national situation. That you...

SONIA
No, no, that’s just…

MORGAN
...representing what you think should happen in your local hospital.

SONIA
Except…

JOHN
We agree with that. That’s the trouble.

CLARE
Ok, so there’s going to be plenty of good and robust discussion, obviously.
I just want to make sure that we keep the audience in mind. It is medical students who are really unfamiliar with this territory. So we need to make sure that we keep coming back to...

JOHN
Basics.

CLARE
...an explanation of what is available and keep the discussion, keeping the audience in mind I think will be useful. This is not a high level bioethics or human rights group, necessarily. But it is really important for them to hear a good discussion.

NATASHA
Ok, if you’re ready to stand by, I’ll start getting this ready and I’ll hand over.

DYLAN
Thank you.

Now also, I know that I’ve made it aware through email, but Clare this is quite early on, but Clare will be helping moderate as well. I just wanted to make that aware to all of you as well.

Ok, so are we live now Natasha?

NATASHA
You are.

LIVE OPEN SESSION WITH AUDIENCE

DYLAN
[Recording repeating: Clare will be helping moderate as well. I just wanted to make that aware to all of you as well.]

MORGAN
And we’re live.

DYLAN
Good morning ladies and gentlemen and welcome to this live symposium focusing around intersex bodies. Today we are very lucky to have such an experienced and diverse panel who will help us explore the guiding principles and the ethical principles that dictate what we do in situations of ambiguous genitalia.

I’d like to begin by acknowledging the Traditional Owners of the land on which we meet today, wherever it is that you might be listening from. I’d also like to pay my respects to the Elders past, present and future, and acknowledge their connection to country.

Today we have got four panel members.

To begin we have got Professor John Hutson, who is the Chair of Paediatric Surgery at the University of Melbourne, one of the consultant Paediatric Urologists at the Royal Children's Hospital and Joint Group Leader for the Surgical Research Group at Murdoch Children’s Research Institute. Professor Hutson has three doctorates and 25 years of experience in the area of sexual development and has studied mechanism of testicular descent. You may be familiar with his name as he is the author of numerous papers and books for teaching medical students.

Professor Sonia Grover is a Paediatric and Adolescent Gynaecologist, the Director of the Department of Paediatric and Adolescent Gynaecology at the Royal Children’s Hospital, a Research Fellow at the Murdoch Children’s Research Institute and an Honorary Clinical Professor with the University of Melbourne. Professor Sonia Grover has extensive experience in paediatric and adolescent gynaecology having worked in this field for over 20 years. She has been instrumental in establishing this subspecialty in Australia, as well as in Asia and further internationally. As a gynaecologist, Sonia has the skills and expertise to undertake surgery on the reproductive and genital tract.

Our third speaker is Mr Morgan Carpenter, a bioethicist, advocate, and consultant on bodily diversity issues, a Justice of the Peace in NSW, and a graduate and PhD candidate in bioethics at Sydney Health Ethics, the University of Sydney. He is also a member of the Australasian Association of Bioethics and Health Law. An intersex man, Morgan is a co-executive director of Intersex Human Rights Australia, founder of the Intersex Day project and creator of the intersex flag. Current roles include membership of an Australian Human Rights Commission expert group on protecting the human rights of people born with variations of sex characteristics in the context of medical interventions. Morgan has a vast array of peer reviewed articles, books and book chapters pivoting around protecting the right of people born with intersex bodies.

And lastly, Clare Delany who is Professor in Health Professions Education in the Department of Medical Education, Melbourne Medical School, at the University of Melbourne. Clare is a Clinical Ethicist at the Children’s Bioethics Centre at the Royal Children’s Hospital and a Consultant Clinical Ethicist at Peter MacCallum Cancer Centre in Melbourne. Clare teaches and conducts research in cross-disciplinary health practice, health ethics and health professions education and has led multiple teaching and learning initiatives in educational and applied ethics research. Clare has over 100 peer reviewed journal articles, book chapters and books, with a focus on applied clinical ethics, clinical reasoning, and paediatric bioethics.

Before I do handover to Clare, who will help moderate our session, a reminder that there will be a live Q&A following our discussion today so please utilise this by asking questions through the Q&A function. Please do keep in mind that this is a sensitive topic so I do request that questions be professional and appropriate, and respectful as always.

Clare.

CLARE
Thanks very much Dylan. I’d like to start by the following statement that the MDSC organising team would like to explicitly make it clear that intersex variations is normal and the grey zone we are discussing is decision-making for babies born with ambiguous genitalia and during the session we will be using the term intersex as an umbrella term to describe people who are born with atypical genetic, hormonal or physical sex characteristics and recognise that many intersex variations exist.

So I’m going to begin by asking all panel members, but I’ll begin with Sonia, to introduce and talk about the range of variations of sex characteristics and the way babies can present with ambiguous genitalia and intersex bodies.

SONIA
So the, I would like to just side track for moment to say that the expression “intersex” is an expression we just need to be a little bit careful about. Amongst many of the patients that I look after. So a cohort that I, as a gynaecologist would particularly see are a group who have anatomical variations, including being born without a vagina and uterus. Now they don’t see themselves and they don’t identify with the expression intersex. And so many of the different cohorts of people who have atypical genetic, endocrine, or anatomy don’t necessarily identify with that expression and one needs to be very careful about what our choice of words is. For most patients we don’t, and most people, we prefer to be using their actual name of the condition they have.

So for women with vagina agenesis we say vagina agenesis or MRKH which is the name of the four people who the initials of the four people involved in that description of that condition. Many people with congenital adrenal hyperplasia, so they are people with XX chromosomes born with ambiguous genitalia or atypical genitalia so, again, I would be choosing not to use the word ambiguous because it implies that it’s either one or the other, whereas we accept that there is variation and so atypical genitalia. Many people with congenital adrenal hyperplasia, which is an endocrine condition, which is life-threatening, and in many parts of the world children still die of this condition, they also don’t necessarily identify as in having an intersex label as their umbrella expression.

So we as clinicians need to be very careful about the words that we choose to use to our patients and the people that we are involved in caring for.

So I’ve already mentioned there an endocrine cause for atypical genitalia that is often picked up at birth, I’ve mentioned vagina agenesis which is a condition which is usually not picked up until a young girl is 15 or 16 when she does not get her period, so not everyone with differences of sex development, which is an alternative umbrella expression to intersex, so it’s often abbreviated to DSD, we’re always looking for shortcuts with language. So women with vagina agenesis may be picked up when they don’t get periods at 14, 15 or 16 years of age so that is an anatomical variation.

There can be other anatomical variations. Babies are born with their entire lower abdominal wall having failed to close, and so they’ve got a bladder exstrophy, or a cloacal exstrophy, and they can have if they’ve got XY chromosomes and the penis is in two bits or the clitoris is into bits and the urethra is completely open and the bladder is open to the world. They have atypical genitalia at birth and people may not know what the gender of that baby is at first glimpse.

So you can see that you can have quite a variation here and we have people who have, look like phenotypically like women but in fact have testes present. We have young women who failed to go through puberty, who may have XY chromosomes, they do have a uterus often, and they can carry a 30% malignancy risk in those gonads. So I’m raising cancer as an end point in the cohort, I’m raising death as a complication of congenital adrenal hyperplasia. As extremes.

But at the other end of the spectrum there are variations where people are unaware that they have got this variation until they try and have a pregnancy.

So there is an extraordinary range there of conditions that are umbrella’d under DSD or intersex.

CLARE
Thanks Sonia. That is a good overview. Can I go to Morgan, and then to John.

MORGAN
Thank you Clare and thank you Sonia for that overview. Yes I agree that people with intersex variations use a wide variety of different languages and terms to describe ourselves. And I think that, that language choices are often in response to misconceptions and in response to stigma. It’s a difficult issue because changing language doesn’t itself resolve stigma or misconceptions.

I think that nomenclature is a difficult issue and intersex is often added to the LGBTI spectrum and that itself can create a range of misconceptions as well. I think that, I certainly have a lot of empathy for parents and people who feel concerned about that, but intersex is a term that is widely used and has been used for more than 25 years by an intersex movement that exists as a concept. It is one that many people including people with congenital adrenal hypoplasia, people with MRKH and people with bladder exstrophy use to describe themselves. So I think trying to respect the diversity of language choices is really important. But it’s also important to acknowledge that there are terms that are used, particularly in different settings, that have a value.

I also want to comment, if I may, on a couple of issues raised by Sonia in a very brief overview. Clearly there can be some very serious physical issues that need to be considered and addressed very quickly when children are born bladder exstrophy was raised as an example, and so was congenital hypoplasia where the situation of the potential for death was raised - it is a very serious issue. But what I want to make clear about CAH is that it is not ambiguous genitalia with CAH that creates the risk of death. What creates the risk of death is something parallel, which is often regarded as a having a causal effect on people’s physical development.

I also want to raise another issue and that’s that if we are talking about when we know somebody’s gender. I don’t think we necessarily know somebody’s gender when we assign a sex of rearing. We don’t know somebody’s gender really until they are ready to express it themselves.

CLARE
Thanks Morgan. Sonia, do you want to answer that or do we go to John?

SONIA
John, you can go first [laughs].

JOHN
Well, I think that from my point of view, I’m not worried about the rights of the child or moral issues when I see a baby. I’m worried about how the parents are reacting to the fact that they have found that the baby isn’t what they were expecting. And my job is to try and help them come to terms with that with whatever, you know, tools are available in the medical toolkit to fix them. To help them, if they think that’s what required.

And most of the time, I’m looking after children with CAH, where they have got genitalia that are not either normally female or normally male, but are looking different. And the parents are very stressed by this because it is not what they were expecting because your average parent has never heard about intersex or DSD and they are expecting it to look obviously like a boy or a girl and my problem is trying to help them come to terms with the fact that it isn’t looking the way they were expecting and what are we going to do about it.

SONIA
I think, there was a recent case that was discussed not so long ago, actually, at the multidisciplinary team meeting at the Children’s Hospital.and this was a newborn baby who had some, had a few features that were a little bit atypical for this to be a baby girl. The baby did not have CAH and the baby had – looked - if I am forced to say girl or boy, I would say it was more typically female genitals but there were features that were, that the parent were aware of and the paediatricians picked up on.

So further testing had been done to ensure that it wasn’t a mild version of congenital adrenal hyperplasia. And the chromosomes were XY, and I think the testes were quite small, which were just palpable.

So I think this is a baby that has a condition with XY chromosomes and testes which phenotypically looks like a male.

And this family came from a cultural background where, they were immigrants to Australia, and they were keen to take their child back home to introduce their parents to the first grandchild in the family. The couple came in requesting that we actually correct the genital appearance because the last thing they wanted was for their family, their extended family, to uncover the fact that the child was not

JOHN
Not what they expected.

SONIA
Not what they expected. And not a normal girl. And so we had lengthy discussions on several occasions with the family as well as a DSD meeting, a multidisciplinary team meeting, and the critical point came with the family where we pointed out that this child, when this child, they wanted the testes removed, they wanted the labial appearance normalised to normal female appearance, whatever normal is. And in the discussion, the turning point for them was when we pointed out to them that this child, even if they took out, even if the testes were removed, this child may well identify as male and I have got no way of knowing what identity this child will have when it grows up. If they went ahead and did this, then they would be denying their child the opportunity to make choices.

And so, it was very interesting to see the lights go on and to work with the family to point out that what they were seeing was very subtle bodily changes. But they had to work hard because of their ethnic cultural backgrounds, where it is not as readily acceptable to be other than male or female, phenotypical, “normal”. But the family did accept that and they have gone back and introduced the grandparents to their new grandchild.

So, that was using all the tools that we had in front of us to work hard with the family to convince them that doing anything other than letting this child be, anything else would not be appropriate.

CLARE
Thanks Sonia. Morgan?

MORGAN
Thank you for telling that story, Sonia. I think that it’s it raises a number of issues for me, and one of them that I find quite concerning which is an assumption that people from a particular ethnic background might have more difficulty then people of a majority ethnic background, when there’s not much evidence to say at there is widespread understanding of intersex variations anywhere in the world let alone in Australia or in white Australia, in white bread suburbs.

I think what I wanted to draw attention of the audience here to some difficult issues really.

I’m really glad Sonia, that you were able to talk with this parent and find a way forward for the child to grow up and hopefully understand their body and what kind of future they might, what kind of possibilities they might have in the future. And thank you for that.

But I need to draw people‘s attention to, to the diverse and very different ways in which different hospitals around Australia might respond in the same situation. And many of them might use language that we’ve heard John talk about, about fixing people, and about “not normal.”

And we have a number of court cases which illustrate very similar situations. For example, a child who is predominantly phenotypically female with XY chromosomes. There is actually quite a recent Family Court case in Queensland called Re: Carla (Medical Procedure). Where the parents went to the Family Court to authorise the sterilisation, the gonadectomy, of that child. And the judge in the case describes how “surgery already performed on Carlahas enhanced the appearance of the female genitalia”. And the judge in this case was acting upon affidavits by the multidisciplinary team that is responsible for the medical management of that child.

And the sterilisation of that child was authorised in response to what is fundamentally a range of gender stereotypes in a four or five-year-old child who is not able to articulate, freely, the gender identity. And in this case, the type of affidavits that came from the multidisciplinary team include things like Carla happily wore a floral skirt and shirt with glittery sandals, and wears Minnie Mouse underwear, and has her long blonde hair tied in braids. So we can see a lot of very strongly normative ideas about how a body should look and how a child should be that underlie decision-making about surgery and also then consequential hormonal treatment.

So, Sonia, I’m very glad that you raised it, you raised a case that is different to that. But we need to be aware that the practices around Australia vary considerably and there is no clinical consensus about what is appropriate in these cases. So the case that Sonia has described is perhaps no more possible than the case that I have described.

CLARE
Thanks Morgan. Can I just bring in at this point what I’m picking up, what I’ve heard so far, from all three panellists, actually. Really important dimensions of the ethical principles that guide treatment in this area and I want to just highlight those and then go to the surgical interventions because that is one of the key points that is on this discussion plan.

From an ethical perspective, when deciding how to best care for children who are born with variation in sex characteristics, the key guiding principles are that the child is not at any physical risk. And I think the terms that John used which is to “fix things” and also that Sonia referred to when there are variations that put the child’s health at risk, then one of the key principles guiding this is that it is really important that the child doesn’t die or become irreversibly effected where they don’t need to be irreversibly effected or harmed. Physically.

The second ethical principle is to think about the child as they grow up and that, and I think Sonia’s version of, or Sonia’s case had that point in mind. Giving the child a chance to develop their own identity.

Another ethical principle is to leave options open for the child to make their own decision. To preserve the fertility of the child. So that is the irreversible point, you don’t do any treatment that is going to cut off options for the child if you don’t have to.

The other one that John mentioned is respecting the parents’ wishes, and I think this is really a complex area that parents’ wishes do really matter and can’t be ignored completely.

There is a limit to parents’ requests, if they, if their request is going to harm the child in the way the ethical principles I have just set out identify. But I think that’s where parents’ wishes do come in. So I would like to go to John first and then back to Morgan.

So John, in terms of, because you are the surgical expert, here, could you talk about options for surgical interventions and when they are done and why.

JOHN
A common circumstances that I face as a child with adrenal hyperplasia where the genitalia are not normally female and yet the child has female chromosomes and where the anatomy is responding to abnormal androgen produced by the adrenal gland making the genitalia masculinised and would otherwise not be the case.

And surgery for adrenal hyperplasia has been very controversial for a very long time. And one of the reasons it is very controversial is because when it was first started, nobody knew how to do it and it is really important for the medical students to recognise that adrenal hyperplasia, as a diagnosis, a disease that we understood, the abnormality in the hormones, we have only known about it since 1953. So actually I am older than the oldest person in the world who had CAH diagnosed at birth. Because I’m born from 40s. Okay? So in what that means is that in 1950s and 1960s doctors were learning to have, or learning how to treat what they thought was an important abnormality by medical and surgical treatments. And like all learning is done by trial and error. And so lots of the surgery, lots of the medical treatment, was either not very good or was actually totally wrong because at the time they didn’t actually know how to do it. So they had to learn how to do it, and there was no other way to learn than by trial and error.

So there is a whole generation of people in the world who have had surgery, often in infancy, and in retrospect it does not look very good or might be completely wrong.

But the important thing to recognise is that at the time they had the surgery it, the doctors thought it was the right thing to do. Given the amount of knowledge they had at the time.

So one of the difficulties here is that the intersex community of the world are often, are often responding to the fact that they might have had treatment on themselves in infancy or childhood that turned out to be wrong, because we didn’t know at the time how to make it better.

But every day we are learning how to do it better and better, and we are never doing it for what we think is inappropriate or unethical reasons, we are always trying to do it for the most ethical and the most efficient way, but that does not mean that we are perfect. We are clearly not perfect. But we are trying to, doing it better and better.

Putting that into perspective, when I see a child with adrenal hyperplasia with genitalia partly be masculinised, the parent say well can you fix it. And the answer is well yes you can mostly.

And then the question is, are we going to wait until the child is old enough to have the surgery - make the decision themselves - which will be early adolescence at the very earliest probably; or are we going to treat the child like we would treat everything else in paediatric surgery (because if you’ve got a hole in the heart you don’t wait for the child to tell you, you need an operation, you just fix it). And so we are still doing that in genital surgery, we are fixing what we are thinking is fixable using what we hope is the best possible surgical procedures, with the lowest complication rate.

So that in the end when the child grows up they are grateful that we fixed it, like your average child that has had a cardiac operation because they’re alive and they can say thanks doc you fixed me when I was a little kid. And luckily for me most of the children that I see with adrenal hyperplasia later in childhood or in early adolescence, before they go and get taken over by a gynaecology team, is that they are grateful for what we have done for them and they are not the slightest bit upset.

But we recognise that there are some patients, particularly in a previous era or in other places in the country where they haven’t learned as well what to do and having what might be substandard or poor treatment. We recognise that that is a reality of life, but remember it is because we are learning how to do this and we have only known about CAH for 60 years basically. So it’s not very long.

So how long has it taken to doctors to learn reasonable surgery that you can rearrange the genitalia of a baby girl with adrenal hyperplasia so she looks like she’s got normal female genitalia. How long did that take? Historically, it took about 25 years. And now most of the kids that we operate on end up with good functional and anatomical appearance, with a relatively low complication rate so that they do not need surgery over and over. To my mind that is good.

But if you ask, should we put off surgery rather than fixing it in infancy like I would normally do, then I can’t think that that is justified unless there is some very special ethical or cultural circumstance that might suggest that we need to do something different.

CLARE
Thanks, John.

MORGAN
Please.

CLARE
Morgan?

MORGAN
Thank you, um. Thank you for coming to me after that. I think it’s quite, I find that it personally quite troubling how we have gone from questions about whether and when surgery might be appropriate to defending how to undertake or perform surgery.

And I also need to – I need to raise, quite fundamentally, a concern that the ethical principles that Clare has discussed are principles being developed by clinicians at RCH Melbourne and there is some discussion about how they have been adopted more widely. Yet, we still see cases like the legal case that I mentioned.

And the guidelines themselves are contested because it seems that they act as a way of justifying how to perform surgery rather than considering when surgery might be necessary. and I think that this is also something that is quite prevalent in clinical literature. There is a narrative of scientific progress and there is a claim that improved surgical techniques are a meaningful response to a very different question about the necessity and appropriateness of surgery in the first place.

Now, I am not surprised to hear John Hutson use the language he has. There is a paediatric surgeon in Finland who has been unusually vocal in saying that early surgeries are not appropriate and what he says about this is, that if you give a surgeon a hammer then every problem is a nail. So I think that I would encourage people listening to this discussion to take account of the fact that the two clinical professors here are both surgeons and would like you to adopt or see a surgical problem with a surgical solution.

Now, I also would like to talk about a couple of other things as well. I mentioned the ethical principles are disputed. This is because they seem to act, in some cases, as a justification for surgery rather than for an analysis of really whether surgery should proceed or not.

There are some ethical principles that are not so contested. Those principles are fundamental human rights principles. And those principles talk about other things. They talk about the rights of the child. They talk about the right to bodily integrity. The right to physical autonomy. And they also talk about the right to freedom from experimentation. Because children, while saving children’s lives is a really fundamental imperative of medicine, this narrative about scientific progress and about how surgeries were not right, that is not a process… Children are not your objects to experiment on to get surgery right. When surgery is elective, where surgery is about what is cosmetic, that is not acceptable, that is not a good balance of rights.

And there’s also this notion of some surgery being cosmetic and some surgery being functional. And what is perceived to be functional is also challenging in some ways. So, for an example, men being able to stand up to urinate is often described as a functional requirement of being assigned male at birth. But I would argue that that is a cultural, cultural norm that men stand to urinate. So ideas about what is functional can also be determined by culture and by ideas about what is normal or appropriate for men and women, rather than allowing for people to make their own decisions about their bodies, in their own time.

CLARE
Thanks Morgan. I think we are getting a really nice spectrum of where the flash points are and where people may disagree on use of language. I think rather than going back to our panellists at the moment I’ve got a feeling that we might be at the question time which could be a good, um. Is that right Dylan?

DYLAN
Yes, we do have a fair few questions here.
This first one is about the mental health outcomes of assigning a gender at birth. I will direct this one to both Sonia and Morgan. So what are the long-term mental health outcomes of assigning gender at birth?

Are there any longitudinal studies about how early surgical interventions affect the social life of an individual later on? And I asked this because, if surgery is done in an infant’s life, they do not have a recollection of the surgery, so how does this impact their future social, their sexual lives, their body image and their self-confidence as opposed to if they had done surgery later when they could make the decisions themselves.

SONIA
Can I just make a comment about. Because I think one of the challenges here is that we are actually talking about potentially a wide range of different diagnoses. So if I just hone in on CAH. So the group of people with atypical genitalia, who have 46XX congenital adrenal hyperplasia, have a uterus and have ovaries.

Now, if one hasn’t operated on them, and then they start menstruating, you have now got trapped blood, potentially, in the vagina and you have got the potential for an infection so that the blood trapped in the vagina becomes a pus filled space as well. And we have also got an issue about what the right, so what age is this, about 12 or 13 and this is not from my point of view as a gynaecologist, the wrong age to be operating on children and their genitals. So there is a question about would they be better off if they had had surgery done at a young age. And when studies have been done on women with CAH and they have been asked how did they feel about their surgery and when did they want it done. The studies that have been done, both in Scandinavia and in Australia and in Malaysia, have suggested that early is when they prefer to do it and “Earlier, please,” is the answer. So now, that’s sort of sidetracking a bit.

So if we talk about mental health outcomes, we made an effort to try and look at an entire DSD/intersex cohort of the Children’s Hospital a number of years ago. We actually had control groups of young people who had Hirschsprung's - so they had had major surgery when they were little and had a scar on their abdomen. And we compared them to a third group which was a cohort who had diabetes and they had been diagnosed when they were young. So we were picking up on a cohort who had to have repeated hospital visits because we know that repeated hospital visits has a potential to have a negative impact on mental health. We know that the potential to have a big scar on your abdomen might have a repercussion in terms of body image and so we thought that we should have those two comparative groups to a DSD/intersex cohort which was a mixed group. And we undertook to assess this group using a range of different measures, including a breadth of mental health scores. So we were using a depression score, body image score, and there was some sexual function stuff in there as well and we could not find any major difference between the three groups.

So we can say that that wasn’t a complete cohort, that we, that not everyone participated. That is a major challenge in any long-term follow-up study. It is a major challenge, finding people to participate in a study 15, 20, 25 years later. And there is a lot of argument about whether the people who participate in studies are more happy or less happy. And so was our outcome that we demonstrated in that study better or was it worse because, in fact, many of the people who had just got on with life chose not to take the time to spend 40 minutes filling in the questionnaire? So we can have that argument.

So…

And I think that there is one other thing that I would like to draw into and also take this as an opportunity to remind the medical students and as future doctors. The things that we do along the way with regard to how we care for people is incredibly important. If you make, if somebody comes in to you and you have not seen somebody before with CAH or androgen insensitivity syndrome or any of the other, and you as a doctor, think, “I remember. Oh that’s an odd intersex condition, isn’t it? I remember.” or say, “Can you remind me, I didn’t listen very well to that lecture.” So if you do that, you have exasperated that person's sense of being abnormal.

And as far as I am concerned everyone is a variation and we are all different and so anything that we do that makes people feel more abnormal is highly undesirable. So the choice of words, what do you say to a patient, if you have not seen this condition before please do not say, “Can you explain it to me?” Because my patients hate it when you do that. Say, can you send me in the right direction to get me some information or I’ll look that up before I see you next time.

But you have to remember also that mental health is going to be influenced by remembering that 40 years ago tutorials consisted of 20, 10 or 20 students standing around beds and looking at people. People with conditions that were a little unusual were asked to undress or repeated vagina examinations were done. There are a whole range of things that used to be done which I hope is not happening any longer because what we do and how we interact with people it’s going to have an impact on their mental health. So I remember one of my patients saying, you know, having sex it’s a bit like lying there and having a doctors visit

JOHN
[Laughter]

SONIA
Because she had had so many medical examinations. So that is dreadful, so mental health is impacted by what is done and we need to be very careful that we as health professionals. making sure we don’t do any of those things. But we have been avoiding doing that and we have had open disclosure and we have had lots of things that I’m hoping have beneficial impacts on mental health from the studies we’ve done suggest we are doing okay.
Sorry that was long winded.

DYLAN
No, that’s okay. And Morgan what about yourself, what do you see as the long-term mental health outcomes if early surgical intervention is done?

MORGAN
Thank you, I mean I wouldn’t want to – well, First I want to say that love and support of parents and families is the most important thing for the infant or child with an intersex variation. If parents are supportive and loving them, they can help their children grow up with bodies that are different, and that to me is the most important thing.

I am aware of the research that Sonia is referring to, particularly the research with comparison group with Hirschsprung’s disease. And that has been characterised, in a systematic review, as showing the persons with DSD were similarly as distressed as a comparison group of chronically, somatically ill persons. But what is interesting about that is, that I think what it emphasises to me, is that if you treat people as if they are disordered, if you treat people as if surgery has been needed to make your junk acceptable to people, then of course you are going to be self-conscious and of course you are going to be concerned or doubtful about becoming sexually active.

This also then has a relationship to the question of repercussions of assigning a gender. I think that every individual should be assigned a gender provisionally. But, I think that we should not be making assumptions that they are going to live their entire life with that identity.

And I think what I think fundamentally is that there is a circular problem where clinically, a 2006 clinical consensus statement says that rationales for early surgery include mitigating the risk of gender identity confusion relating to genital appearance. Which I think it’s really problematic, because just the experience of having surgery will make you uncertain about your gender. The experience of having genital surgery says there was something wrong with me which you have to question.

So we have this kind of circle where, where I see quite a fundamental problem with current medical practice. Current medical practice is reinforcing stigma. Reinforcing social norms that men have to look and perform a particular way and women have to look and perform a particular way. Rather than challenging those assumptions and rather than saying it’s okay to be different. And the intersex movement is fundamentally saying it is okay to be different and it is okay to make your own choices in your time about how you want to live your life.

DYLAN
Thanks Morgan. Following up on from that, and I will address this question to both Morgan and Clare, what can we as medical professionals do to break down the stigma associated with intersex bodies.

CLARE
So I might just start. Just briefly I think there are actually a lot of areas that we are agreeing on here.

JOHN
Yeah, Agreed.

CLARE
I think fundamentally what we can do is, you know, from a human rights perspective as Morgan has used that language, is to very much be aware of the rights of the child to make decisions about themselves and to live as they… and to decide how they want to live and what aspects of their body they want to change. And so I fully agree with that.

I think that in our multidisciplinary teams at the Children’s Hospital, which is my experience, that is absolutely what drives our treatment. And I think what has come out really strongly today is the need to be very much aware of what a child needs in the future and what a child needs right now, if there is any risk to them, that needs to be attended.

But if I think that’s what medical students, as they become doctors can do, is - as Sonia has pointed out - learn about these conditions, learn about the complexity, about the grey areas where decisions are contested and the sort of supports that people need so I think really practically that is what I am taking away.

MORGAN
If I may, I would like to encourage students working in hospitals, I encourage you to put parents in contact with particularly Intersex Peer Support Australia. It is a support group that is led by people with intersex variations including androgen insensitivity syndrome, CAH, MRKH and other variations. And there are a range of other support groups as well.

But those support groups can offer parents a space to talk about these issues and meet other people who have had similar experiences. There are children who are growing up with physical variations in their anatomy that are quite happy because they are part of a community. I think that having that connection is vitally important for parents of children.

CLARE
Thanks Morgan.

DYLAN
Next question. Sorry Clare?

CLARE
I think we are nearly out of time.

DYLAN
Yes we are. We have time for one more question.
We have a few questions around the role of the parents in the decision-making and it seems that, that some clinicians feel that the role of the parents is quite strong whereas others believe that it is the rights of the child that you have to consider. I’ll address this to anyone - what is the role of the parents and why is the parents role so important in making these decisions?

SONIA
I think, again, there was a case not so long ago discussed in the multidisciplinary team where the mother was very accepting of the child who had atypical genitals and the father was really struggling. There was no way that his child, and I can’t actually remember which gender the child was being raised as, but y’know really struggled with that and so the psychologists were being involved in that to try to help and pick why the father was was so fixated.

We do try and send people to support groups but I can’t force someone to go to support groups. So we certainly make recommendations and certainly, again, my young teenagers I’m regularly recommending even young adults going along and join a support group or meet some of the others. And people aren’t always ready for that. so they are challenges for us as health professionals - how do you make people take that next step.

DYLAN
Thanks Sonia. In the interest of time I would like to conclude here.
And thank you all for your participation and, of course, a great panel of speakers for their participation. It has been quite amazing and also educational for us as medical professionals or future doctors to get such a valuable insight into such a complex topic. I’m sure that the students have enjoyed hearing your experiences so thank you John, Sonia and Morgan for your time and contributions today.