SHE Pod Season 3 Episode 1: Morgan Carpenter on Intersex Human Rights

9:04AM Feb 23, 2022

Speakers:

Kathryn MacKay

Morgan Carpenter

Keywords:

bioethics

intersex

human rights

debate

medical interventions

people

advocacy

surgeons

medicine

practices

clinicians

chapter

research

talking

surgery

framework

variations

justify

critique

hear

Hello, and welcome to the SHE Research podcast. I'm your host, Kate Mackay. And today I'm joined by Morgan Carpenter to discuss his paper with Chris Jordens entitled 'When Bioethics Fails: Intersex, Epistemic Injustice and Advocacy'. Hello, Morgan.

Hi. Thanks for having me on the podcast. It's great to be talking with you.

Thanks so much for joining me, this is going to be a great conversation. So we're talking about a chapter that you wrote with Chris Jordens today. Or at least we're using your chapter to frame a discussion. Because the chapter itself is a discussion. So it's an interesting format (laughs).

Yes, it's lovely having an interview about an interview.

Yeah, exactly. So I wonder if you could actually just give our listeners a sense of what your chapter is about to get started?

Yeah, well, yeah, it's fundamentally about how medicine and society treat people with innate variations of sex characteristics. And you know that that's a long term to describe a population that has many different terms attached to it, including the word 'intersex', including clinical language, of disorders of sex development, or differences of sex development, and historical language as well like the word 'hermaphrodite' that still has a resonance or impact on the population. So the focus is on Bioethics and epistemic injustice, and advocacy. And I think, really the relationship between bioethics and advocacy, which very much is focused upon my own experience, I mean, to some people, you know, listening might not know, I describe myself as an intersex man, I have a history of medicalization to make my body appear more typically male, including hormone treatment and surgical interventions. Those surgeries were initially... did not have my personal informed consent, even though I was old enough to consent to that, because I had no connection to community, I had no real understanding of the long term effects of medical interventions. And I think that those personal experiences have driven both my advocacy work and my interest in bioethics. The the interest in advocacy work is - I want other people to have community connection, to have connection to peer support. And I want through my study in bioethics to actually understand more about medicine and why it's treated people the way it does, or why it continues to treat people like that.

Yeah. So I, I wonder if that kind of touches on some of the motivations for writing this chapter, because the chapter is set up as a discussion between yourself and Chris, where you're sort of discussing the limitations of bioethics as a place of critique, I suppose, of medical practice, as compared to advocacy? Would that be kind of fair?

It's fair, I think, but it's a limitation that is shared by many other forms of inquiry as well. I think it is worth saying I mean, it is an interview of an interview originally, the material in the chapter was a podcast. It was a, an audio interview by Chris Jorden's with me, that was part of the curriculum for Biomedicine society, which 15 years was a unit of study in the bioethics program. And the rationale for essentially writing it up more formally, as a chapter was intended to just try and share the discussion and share the analysis really, the relationship between bioethics and other lines of inquiry or other forms of inquiry, and particularly the relationship between bioethics and advocacy in the hope that it might be useful or or provoke, you know, consideration of these issues by by other people in bioethics in particular, but also in other areas of research that maybe haven't touched upon bioethics so much.

Yeah, I'm curious to ask you about your view on the relationship between bioethics and advocacy.

(laughs). So the paper does make an argument about this paper. That that is hinted at in the title - 'When Bioethics Fails'. And the argument is that bioethics has not prevented harm to individuals with such variations. And that advocacy is necessary because of that failure. And that's quite a significant, consequential statement. The, you know, the paper doesn't consider all of the reasons why bioethics has failed. But I think, you know, bioethics over the past 25, 30 years has been used as a tool to justify medical practices that fail to respect the human rights of people with innate variations of such characteristics.

Yeah, this is an interesting... an interesting kind of paradox, I guess, as I see it, which is that while bioethics tries to critique and tries to change for the better certain kinds of practices in medicine, and research and nursing, and all sorts of things, it can also be used as a way of justifying practices that aren't actually good or independently justifiable. But people who do those practices can use bioethics almost as a sort of shield. And there's, there's an interview that... or actually a debate that you engaged in with some surgeon that we'll link too in the show notes as well. But I thought brought this up, because they sort of seemed to use bioethics as a justification for what they were doing and you were quite critical of that. Kind of press them on it.

Yeah, I mean, I think you know, that the history of bioethical inquiries on these issues is not a good one. If we go back to the 1990s, you know, I've read a paper in the 1990s, that talks about how parents who did not consent to surgery on their child were negligent. And that was critiqued at the time, of course, but over the years since then, there are... there are many papers that talk about intersex issues in bioethics. They are as diverse as the bioethicists that write them. But the predominant trend has been to justify medical intervention, or to give- if not directly justify medical intervention, to create the circumstances where medical interventions are possible, permissible and facilitated. I think that some of that arises because of... because bioethics is a young profession, and the kinds of medical interventions that take place, have a longer history. So there is, I mean, I guess you could say it's an incumbency advantage, you know, that the status quo is one where medical interventions are routine, and changing that is a more difficult task, justifying or letting them happen. Yeah, but you mentioned the debate. I mean, the debate, I think, is a debate between myself who has a masters in bioethics at Sydney Health Ethics, and is doing a PhD in this field. It is chaired by a bioethicist in Melbourne, who attempts to construct some kind of common understanding. And the other two participants are a paediatric neurologist and paediatric gynaecologist, both of them surgeon and I critique through the debates, the whole range of issues From the composition of the participants in the debate, which lacks any kind of psychosocial or psychological engagement, which is illustrative of some of the issues in the medical paradigm to failure in medicine to respect the human rights of children, and even adults within intersex variations. I mean, you've listened to it.

Yeah. And I did find it really interesting. And, again, listeners who are who are keen can check it out, too. Because it is publicly available. And I mean, what I, what I noticed, or what I thought I noticed was that the same ground was kind of covered repeatedly, there was a kind of a lot of 'Yeah, but' from the surgeons on the panel, where you're sort of giving these critiques of assumptions or practices, and the response was sort of, 'yeah, but science says', or 'our best medical evidence says', and it seemed to me that this brought up, first of all, there was clearly a kind of gulf, I thought, between what you were saying what they were hearing, and a kind of inability to hear what you were actually saying, and to take it on and respond. And then I think I also noticed, what I suppose is a kind of common theme in medicine, which is that there's a kind of engineering approach. There's a problem here, we'll fix it. And it doesn't take account of, you know, how do we construct the existence of the problem in the first place? What does it mean, when you've just said that? What does it mean to construct the solution to it?

Yeah, I completely agree with both of those points. I mean, you know, that language of fixing things is actually used, one of the surgeons talks about fixing things and giving parents what they want, without without regard for, you know, any human rights or ethical considerations. So that person is the chair of Paediatric Surgery. The institution. So yeah, that language. I mean, it's quite wild. And yeah, I think you also describe then a talking across purposes, or not all speaking and not being heard. And I think that is a... an experience that is not just applicable to that debate. I think that's, it's evident in the literature. It's evident in discourse and discussion between different stakeholders over a 25 year period. We can go back, you know, as far as 1996, 1993, and talk about these issues in the same way. You know the first advocacy organisation in first well known advocacy organisation is called Intersex... Intersex Society of North America, and it was established in 1993. And just three years later, the members of that organisation were being described in the New York Times as 'zealots' and 'the disgruntled ones'. I think that exemplifies an incredibly rapid and hostile response by clinicians to contestation about medical practice, then, and medical practice has... well there are claims that medical practices have changed. But there's very little evidence to support that notion of change. In a separate book chapter published in 2018, which is based on research I did as part of the Masters of Bioethics program at Sydney. I do actually try and look at the evidence that we have available from different sources, including Medicare procedures, and statements by clinicians about their practices, including actually one of the clinicians or the surgeons in the in the debate. And there's very little evidence to say that medical practices have changed. When you look at the literature, when you look at the evidence on medical procedures.

Well, I wanted to ask you, I guess something a little bit different, still connected to what you've been saying, because in the chapter and throughout our conversation and even in the, in the debate, you use the language of human rights a lot. And I just kind of wanted to ask you about that. Partly because I have, you know, I teach human rights and part of the moral theory unit of study that I teach in the Masters of Bioethics. But it's, I find it a tricky one, in some ways to to fit it into bioethics. The debate seems to be bioethics or human rights, will human rights supersede bioethics? Which of these is useful? Or, you know, how do they fit together? And so I was curious to hear from you. Why human rights has the value or the importance that you think or the utility, I suppose that you think it has, in these kinds of debates.

I mean the human rights system exists because of moral and ethical failure, particularly more on ethical failure during World War Two. And the treatment of minorities, and you know, a whole range of different populations are coming grievously affected. And we know that medicine has been an active participant in many of those failures. So here are a system to my mind is, is a it's actually a system of jurisprudence, and of international jurisprudence that sets out standards and norms. And countries, including Australia have obligations under that system, to protect, respect and fulfil the human rights of citizens and non citizens. So I guess in my head, the human rights system is a normative framework that sets... that should set the parameters for bioethics and medicine. In terms of defining what is reasonable or unreasonable or permissible or impermissible as forms of treatment. This was a normative framework, it's... you could argue it's a deontological framework. And it's a framework that has contested roots. That is the only framework given that con- even given that contestation that is widely accepted as providing the minimum framework for how we should live together. In our country and around the world. That's a bit of a kind of a very broad view. It's a it's a framework for how we live together as human beings on the same planet. And it's as flawed as we are. But it's the only framework we have. Human Rights System is not just at that macro, international level, it has implications for how individuals and institutions treat others. And this notion about you know, respecting, protecting and fulfilling the human rights of humans, is relevant to medicine. It's relevant to the treatment of all populations with adverse health outcomes, whether they're First Nations people, women, people within intersex variations and other minority groups. And these issues are evident at every level, whether we're talking about surgical and hormonal treatments on infants and children with intersex variations, whether we're treating the role of prenatal screening, whether we're talking about the COVID pandemic, on every level. So to my mind, they set the parameters within which probiotics should be considering, what is what is appropriate, what is not appropriate, what's ethical, what's not ethical.

Yeah, super interesting. We're already coming towards the end of our conversation. I really wanted to ask you a kind of final question about the chapter. And I think actually about the debate too, but I wanted to ask you, what you hope people will come away from the chapter or the debate, or, you know, you could answer them differently. Having learned or what kind of key ideas you hope that people will walk away with.

Yeah, thank you. That's a kind of good question. A really good question. I mean, it doesn't answer... it's not intended to answer all the questions about how bioethics should respond to the existence of intersex people and the way that people are treated in medicine. I hope it might give people an opportunity to think about those issues, perhaps for the first time. And I hope that more people in bioethics might familiarise themselves with the way that people with name variations, such as controversies are treated in medicine. And there's a lot of work that's being done currently in Australia. So people working in hospitals in Australia can can read an Australian Human Rights Commission inquiry report that was published in October last year, that calls for root and branch reform of medical practice in this area. And, you know, you can watch that debate between myself and the paediatric surgeons and, you know, hear what they have to say. And look at the research they present. I think also, the research that they present is itself challenging. And while I did respond to it at the time, I think it's worth going and reading the book that the paediatric surgeons wrote, it was published 2020. And it outlines the research that they refer to in the debate. And you'll see if you read it, that the research is based upon old data, 15, 17 years old. It- that data is based upon clinicians studying their own patients. So it's subject to confirmation bias, ascertainment bias, it's research where clinicians have sought to justify their own practices. And often the people that are being studied actually have no agency to understand themselves in any way other than through the clinical paradigm, particularly the research that's presented on masculinizing surgeries that research in Melbourne is on children on adolescents who don't have the age or agency to really know the outcomes of surgeries. And the conditions are making assumptions based upon those adolescents not having a personal recollection of surgery and thinking that that's a good... that that leads to a good outcome. There's a lot wrong with this, and I hope people will take the time to consider the issues more. We need more people thinking about the issues.

Yeah, absolutely. Yeah. Well, thank you so much for bringing these to us, bringing the issues to me, to our listeners. And hopefully, people will take you up on this. Learn more, find out more about it.

Yeah and please get in touch. I'm always keen to hear from people and engage.

Cool. Well, thank you so much for talking with me, Morgan. It was really interesting.

You're welcome.

Thanks so much for listening to this episode of the SHE Research Podcast. You can find Morgan and Chris' paper linked in this episode's show notes along with a link to the debate and a transcript of our discussion. SHE Pod is hosted by me Kathryn Mackay and produced by Madeline Goldberger. You can find our other episodes on Spotify, Radio Public, Anchor or wherever you get your podcasts of quality. Thanks again for listening. Bye.