What do intersex people need from doctors?

Magazine name on top of multicoloured tilesThe current issue of O&G Magazine (from RANZCOG) features a series of articles relevant to the care of LGBTI populations. Sydney Health Ethics PhD candidate Morgan Carpenter contributed a powerful piece on deeply troubling and often involuntary medical interventions carried out on babies and children with intersex variations, including sterilization and so called ‘normalizing’ surgery. He ends with a demand for “transparency, accountability and respect” from the medical professions. See an extract from the piece below and please click through to read the full article.

The current social and medical environment presents a challenging contradiction. That is, medicine constructs intersex bodies as either female or male (and “disordered”), while law and society construct intersex identities as neither female nor male. Medicalisation is posed as a solution to discrimination and othering, while legal and social othering of intersex people as a third sex is posed as a solution to medicalisation.(2,3) This conflict arises from fundamentally different ideas – not about the nature of intersex variations, but rather about their meaning and how to name and treat them. Neither medical nor socio-legal models allow for individual self-determination. Neither is based on strong evidence. Both cause harm.

Carpenter, M (2018) What do intersex people need from doctors? O&G Magazine, 20(4) something? Retrieved from https://www.ogmagazine.org.au/20/4-20/what-do-intersex-people-need-from-doctors/

Is Cognitive Enhancement a Problem in Australia?

By Cynthia Forlini

This article was originally published in Australasian Science and is reproduced with permission. It can be cited as Forlini, C (2018) Is Cognitive Enhancement a Problem in Australia? Australasian Science; Vol. 39, Iss. 5, (Sep/Oct 2018): 49. Retrieved from: https://www.australasianscience.com.au/article/issue-sepoct-2018/cognitive-enhancement-problem-australia.html [paywalled]

Graphical representation of a head containing cogs alongside a broken capsule releasing more cogsJust because the non-medical use of cognitive stimulants isn’t common, it doesn’t mean it isn’t a problem.

“Cognitive enhancement” is a catch-all term for the improvement of cognitive function: attention, alertness and memory. It has caught our attention because it is thought to be the main motive for the non-medical use of prescription stimulants like methylphenidate (Ritalin) and modafinil by university students.

People who take these stimulants believe they help gain an edge in competitive environments despite weak scientific evidence to support their so-called enhancement effects in healthy individuals. Over the past decade, international studies have contributed to our understanding about who takes stimulants, when and why. One question lingers: is it a problem?

These stimulants are scheduled as “drugs of addiction” that are illegal to possess without a prescription. A doctor would not prescribe their use to otherwise healthy individuals. Peers, colleagues and family members with prescriptions for stimulants are the major sources of tablets diverted for non-medical use. Others buy them online.

Exact global figures for the prevalence of the non-medical use of prescription cognitive stimulants remain elusive. Studies vary in the measures and methods they report, which makes them hard to compare. In students, results from the USA suggest usage rates ranging from 5% to 35%. In Australia, studies have reported a narrower range: between 6.3% and 10.9% of students used a stimulant for enhancement in their lifetime (6.6% in New Zealand).

In the general population, data from 2012 suggest that around 2.4% of Australians have used a stimulant non-medically. These rates are generally considered low, especially compared with the use of more readily available substances such as high energy drinks, caffeine and alcohol. Just because the non-medical use of stimulants isn’t common, it doesn’t mean it isn’t a problem.

Looking for evidence of harm or adverse effects in those taking stimulants non-medically might provide a better answer. Using prescription stimulants is generally associated with disturbances in sleep, appetite, cardiac rhythm and mental health, but few of these effects have been officially reported as a result of non-medical use.

Little evidence of the harm students may be experiencing doesn’t mean there is none. The problematic aspects of the practice could be elsewhere, or people may not be reporting side-effects because they fear legal consequences.

Investigating the motives behind non-medical stimulant use for cognitive enhancement is also stirring up concerns for the overall health of students. Common motives for use include improving concentration, focus, wakefulness, better marks and some recreational uses.

Some researchers are suggesting that students use stimulants to compensate for sleep deprivation or cope with stress associated with a variety of competing demands (e.g. studies, sports, paid work and social activities). Others have proposed that the non-medical use of stimulants is a mode of self-medication for symptoms of depression caused by disinterest and lack of motivation. We don’t yet know why students turn to stimulants to manage these issues instead of seeking medical attention or using non-pharmacological approaches such as sleep, diet and exercise.

The ethical issues in the non-medical use of stimulants for enhancement are complex. Acceptability of their use among students is generally quite low. Part of the reason might be due to the parallels with doping in sports (e.g. inappropriate possession of a substance and gaining an unfair advantage over peers). However, cognitive enhancement appears to be socially embedded, suggesting that other factors might be trumping individual morals. Many of the risk factors for use have socio-economic underpinnings, such as university location, gender, low or average academic performance, fraternity membership and a history of drug use.

Peer groups are potentially coercive environments. On the one hand, an individual who will not take a stimulant might feel disadvantaged in a group where it is common. On the other hand, the perception that stimulant use is common among one’s friends might make it seem more acceptable.

Whether and on what basis we deem the non-medical use of stimulants a problem in Australia, or not, remains an open question. There is plenty of evidence available to inform this decision, but a conclusion will automatically raise another question: who will be responsible for addressing risk factors or governing the non-medical use of stimulants in competitive environments?

 

Dr Cynthia Forlini is a Research Fellow in neuroethics at Sydney Health Ethics, University of Sydney. She was awarded an Australia Research Council Discovery Early Career Research Award (2015-17) for her work on cognitive ageing.

Image Credit: Sangoiri/Adobe

Harris Student Fellowship Showcase

Small wooden artists' mannequin lyning prone on large grey pebbles with quartz linesPlease join us for this year’s Harris Fellowship Showcase. Hear the results of students who have made art about grief, created a web advocacy tool for chronic pain, constructed a podcast series in the medical humanities and explored nurses in remote Indigenous communities. Their work is creative, inspiring, hopeful and exploratory.

Staff and students from all faculties will find these projects fascinating.

Students interested in applying for a Harris Fellowship 2019/20 are highly encouraged to attend. For more information on this Fellowship contact Dr Claire Hooker.

Date: Thursday, 29th of November 2018

Time: 10.00-11:30am (followed by light lunch)

Venue: Burkitt Ford Lounge, Edward Ford Building, Fisher Road, The University of Sydney NSW 2006 (Camperdown Campus)

This is a FREE event however registration is essential via Eventbrite.

This project received funding from the Harold and Gwenneth Harris Endowment for Medical Humanities.

The Harold and Gwenneth Harris Endowment for Medical Humanities aims to develop capacity in the Health Humanities; to encourage cross-disciplinary learning and interaction between health, medicine, the arts and humanities; to enable students and clinicians to access experiential learning in the Health Humanities that fall outside standard University activities or funding parameters; and to enrich student learning and development to make medicine and health care more humanistic and patient-centered, and encourage self-care.

 

Image from Pixabay, used under CC0.

Intersex people: not invisible in sport, but often inadvertently excluded

By Morgan Carpenter

This article was originally published by Play By the Rules and is reproduced with permission. It can be cited as Carpenter, M (13 September 2018) Intersex people: not invisible in sport but inadvertently excluded. Play By the Rules. Retrieved from https://www.playbytherules.net.au/resources/articles/intersex-inclusion
Photo of participants at the second Australian - Aotearoa/New Zealand intersex community advocacy retreat, Erskineville, April 2018.

Participants at the second Australian – Aotearoa/New Zealand intersex community advocacy retreat, Erskineville, April 2018. https://darlington.org.au

There are many misconceptions and generalisations about intersex people, in sport and elsewhere in society. Often these are based on assumptions that intersex people are a homogeneous group, and an identity group, a sexual orientation or a gender identity. The reality is different, both more complex and more mundane. Regulations by international sporting bodies target some intersex women, inhibiting some people from participation in sport, but many intersex people are likely to be completely invisible across sporting codes and in amateur and professional settings. Particularly for those people that don’t participate fully in sport, body shaming may be the most significant barrier.

Intersex people are born with sex characteristics that don’t fit medical norms for female or male bodies, and we can suffer stigma, discrimination and medical interventions without our personal informed consent as a result.[1] These sex characteristics can relate to our chromosomes, genitals, gonads (such as testes or ovaries), and hormone response. Importantly, this definition (based on a widely accepted definition by UN bodies) does not specify anything about sex classifications, gender identities or sexual orientations; these all vary from person to person. The definition focuses only on what we share in common: experiences that arise from our physical characteristics.

The intersex population is extremely diverse, with more than 40 relevant genetic traits known. Intersex traits are innate, but they can be identified at any age, including at birth or in early childhood, during puberty or when trying to conceive a child. Intersex traits can also be diagnosed prenatally. Intersex people who are old enough to express our identities can be heterosexual or not, and cisgender (identifying with sex assigned at birth) or not.[2]

As the author of this article, I’m an intersex man. Like many intersex women and folks with other gender identities, I’m not directly affected by the substance of new IAAF regulations.[3] These essentially target women with one of a small subset of intersex variations in a small subset of athletics events where a small performance advantage is claimed. However, all of us are impacted by the regulations’ focus on people with “differences of sex development”, a clinical term for intersex variations, and all of us are impacted by media and institutional representations of who intersex people are.

Those representations include assumptions that birth-assigned identities are deceptive or inaccurate, and that we are not “real” women or men. Other representations suggest that we are a threat to women’s sport, even though earlier IAAF regulations were suspended in 2015 without subsequent evidence for this. Misrepresentations also include assumptions that we have necessarily transitioned gender role, or that we need to, when sporting regulations have targeted women who have always been girls or women. Some news reports have suggested that women athletes with intersex variations necessarily have, or had, testes. Some do, and sporting bodies have a terrible history of exclusion and partial inclusion.[4] The situation is further complicated by inaccurate reporting on trans athletes, suggesting that “XY women” have necessarily transitioned gender, when some women with intersex variations also have XY sex chromosomes. The truth of our bodies is often mundane or traumatic.[5] The impact of such misconceptions is profound, and this does not encourage public disclosure.

The 2018 regulations on women with intersex variations are based on limited, “sparse and mostly uncontrolled” evidence, and they have been questioned by a range of commenters for their statistical validity and ethics.[6] A case is now being taken to the Court of Arbitration in Sport to contest their validity.

Unlike the big name athletes that are the target of the new IAAF regulations, most people directly affected by those regulations will have received forced medical interventions in childhood that will affect their participation in sport and, potentially, their capacity for elite competition. Australian research published in 2016 identified that bullying, stigmatisation, and medical interventions during puberty affected school attendance and outcomes.[7]

The words we know and use to describe our bodies also vary widely, depending on our experiences of medicalisation and medical interventions, disclosure of this information to us, and also in response to stigma and misconceptions. Some people may be unaware of the word or its relevance to them, because of either the medicalised ways that their bodies have been described to them, or associations of intersex with LGBT populations.[8] Other people may not use the word intersex because it has borne the weight of public misconceptions about our bodies and identities, but fundamental concerns about the regulation of bodies affect all of us nonetheless.

In many cases we lack access to the information and peers needed to help us form affirmative self-conceptions. Forthcoming data and recent Family Court cases have shown that children born with variations of sex characteristics have been subjected to labioplasties and clitoral surgeries without court oversight; hormone treatment may also imposed without consideration of our actual identities.[9] These clinical management approaches are contested, with human rights institutions describing them as harmful practices and violations of children’s rights.[10] Intersex advocates have been raising these issues for decades,[11] but they remain standard.[12]

In many cases, sports clubs simply will be unable to know if a player has an intersex variation: it will not be obvious, the player will not know or use language around what it means to be intersex, and their variation is unlikely to have any impact on their playing ability. Having said that, some of the most significant barriers we face are about body shaming and the stigmatisation of our physical characteristics. That is, shaming and stigma based on ideas of what men should look like, and what women should look like. Whether relating to post-surgical scars, developmental delays, height, or intimate sex characteristics, body shaming is pervasive. Policy frameworks that address intersex issues as matters of personal identity will fail to address these issues.

Any guidelines limiting access to sporting events need to be evidence-based, and avoid generalisations about intersex people. They should never pressure individuals to undergo medical interventions.[13] Any guidelines should not assume that intersex people are LGBT, or have any particular identity, sexual orientation or gender identity. Best practice guidelines will address body shaming as a concern. Some good model policies exist, such as by the Women’s Sport Foundation.[14] Here in our region, an Australian and New Zealand community consensus statement, the Darlington Statement, offers a good starting point to find out more about intersex people in Australia.[15]

References

[1] Office of the High Commissioner for Human Rights, African Commission on Human and Peoples’ Rights, Council of Europe, Office of the Commissioner for Human Rights, Inter-American Commission on Human Rights, Special Rapporteur on torture and other cruel, inhuman, or degrading treatment or punishment, Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Special Rapporteur on violence against women, its causes and consequences, and Special Representative of the UN Secretary-General on Violence against Children. ‘Intersex Awareness Day – Wednesday 26 October. End Violence and Harmful Medical Practices on Intersex Children and Adults, UN and Regional Experts Urge’. Office of the High Commissioner for Human Rights, 24 October 2016. http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=20739&LangID=E

[2] If you’re looking for it, there is now a word for “non-intersex” and it’s “endosex”

[3] International Association of Athletics Federations. ‘Eligibility Regulations for Female Classification (Athletes with Differences of Sexual Development)’. IAAF, 23 April 2018.

[4] Martínez-Patiño, Maria José. ‘Personal Account A Woman Tried and Tested’. The Lancet, December 2005, 366–538.

[5] Human Rights Watch. “I Want to Be Like Nature Made Me”, 2017. https://www.hrw.org/report/2017/07/25/i-want-be-nature-made-me/medically-unnecessary-surgeries-intersex-children-us.

[6] Karkazis, Katrina, and Morgan Carpenter. ‘Impossible “Choices”: The Inherent Harms of Regulating Women’s Testosterone in Sport’. Journal of Bioethical Inquiry, 16 August 2018. https://doi.org/10.1007/s11673-018-9876-3.

[7] Jones, Tiffany. ‘The Needs of Students with Intersex Variations’. Sex Education 16, no. 6 (11 March 2016): 602–18. https://doi.org/10.1080/14681811.2016.1149808.

[8] Carpenter, Morgan. ‘The “Normalization” of Intersex Bodies and “Othering” of Intersex Identities in Australia’. Journal of Bioethical Inquiry, 7 May 2018, 1–9. https://doi.org/10.1007/s11673-018-9855-8.

[9] Intersex Human Rights Australia. ‘Submission to the Australian Law Reform Commission on the Review of the Family Law System – Issues Paper’, 7 May 2018. https://ihra.org.au/32111/alrc-may-submission/.

[10] Committee on the Elimination of Discrimination against Women. ‘Concluding Observations on the Eighth Periodic Report of Australia’, 20 July 2018. Human Rights Committee. ‘Concluding Observations on the Sixth Periodic Report of Australia’, 1 December 2017.

[11] Briffa, Tony. ‘Intersex Surgery Disregards Children’s Human Rights’. Nature 428 (15 April 2004): 695. https://doi.org/10.1038/428695a.

[12] Carpenter, Morgan. ‘Intersex Variations, Human Rights, and the International Classification of Diseases’. Health and Human Rights 20, no. 2 (1 August 2018). https://www.hhrjournal.org/2018/08/intersex-variations-human-rights-and-the-international-classification-of-diseases/. Australian Human Rights Commission. Protecting the Human Rights of People Born with Variations in Sex Characteristics in the Context of Medical Interventions Consultation Paper. Sydney: Australian Human Rights Commission, 2018.

[13] Puras, Dainius, Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. ‘Sport and Healthy Lifestyles and the Right to Health’, 4 April 2016. http://ap.ohchr.org/documents/dpage_e.aspx?si=A/HRC/32/33.

[14] Women’s Sports Foundation. ‘Participation of Intersex Athletes in Women’s Sports, The Foundation Position’, 20 September 2011. https://www.womenssportsfoundation.org/advocate/foundation-positions/lgbt-issues/participation-intersex-athletes-womens-sports/.

[15] Androgen Insensitivity Syndrome Support Group Australia, Intersex Trust Aotearoa New Zealand, Organisation Intersex International Australia, Eve Black, Kylie Bond, Tony Briffa, Morgan Carpenter, et al. ‘Darlington Statement’. Sydney, NSW, March 2017. https://darlington.org.au/statement.

 

Morgan Carpenter is a co-executive director of Intersex Human Rights Australia and a graduate and PhD candidate at Sydney Health Ethics, University of Sydney. He is a member of a current Australian Human Rights Commission expert reference group on protecting the rights of people born with variations of sex characteristics in the context of medical interventions. Find out more at morgancarpenter.com.

Sydney Health Ethics at the Australasian Association of Bioethics and Health Law 2018

Staff and students from Sydney Health Ethics gave a large number of presentations and workshops at the recent annual meeting of the Australasian Association of Bioethics and Health Law (AABHL), held in late September in Townsville.

Search on the hashtag #AABHL2018 to catch a glimpse of what was talked about.

Centre students and ECRs were very active. Research Fellow Cynthia Forlini and HDR Student Jonnie Kennedy coordinated a fully booked Pre-Conference workshop for Students and ECRs in bioethics. Ian Kerridge was one of the featured workshop speakers. Sydney Health Ethics Research Associate Dr Lisa Dive won a Praxis Australia ECR Research Award!

Between them, Sydney Health Ethics students, staff and associates gave 13 oral presentations:

They also facilitated five workshops:

Student and Staff alumni were also well represented, including Prof Stacy Carter, Assistant Prof Tamra Lysaght, Professor Rachel Ankeny, A/Prof Catherine Mills, Prof Michael Selgelid, Dr Vicki Xafis, Dr Chris Degeling, Dr Chris Mayes (keynote Whiteness as a bioethical problem on ), Dr Jacqueline Savard, and Selina Metternick-Jones.

 

Written by Ainsley Newson

 

Miles Little Annual Lecture 2018

The Miles Little Annual Lecture is hosted by Sydney Health Ethics, University of Sydney. It honours our inaugural Director, Professor Miles Little, who founded the Centre for Values, Ethics and the Law in Medicine (VELiM) in 1996. The centre was renamed Sydney Health Ethics in 2017. The annual lecture celebrates Professor Little’s significant and continuing contribution to scholarship in this area.

The 2018 Miles Little Annual Lecture will be given by Dr Bridget Haire:

Considering the impact of communities on research practice – the case of HIV

Across the globe, activism by communities affected by HIV has shaped research, policy and treatment. From ACT-UP die-ins in the 80s, through to the treatment access actions in the 90s and major sex worker led protests in the 2000s, HIV activism has presented an informed and often photogenic face to global media. In Australia and elsewhere, behind the attention-grabbing activist antics sat great networks of community-based collectives that gradually morphed into sober and respectable NGOs that provided care for the sick, health promotion to the potentially at risk and advice to government.

In this presentation I will consider some of the key lessons that AIDS has taught us about the role of communities in emergent infectious disease epidemics, drawing on my experiences as an HIV community sector worker turned bioethics researcher. I will argue that HIV has demonstrated how the involvement of affected communities is critical to ethical responses to infectious disease threats and provide examples from my colleagues in Nigeria about how this has been leveraged in the response to Ebola. I’ll finish with some reflections on funding community collaboration in research and health programming.

Dr Bridget Haire, Kirby Institute, UNSW

Photo of a person with a microphone on front of a small audience

Bridget Haire

Dr Bridget Haire is a senior research fellow at the Kirby Institute, University of NSW, where she conducts research in the areas of research ethics, public health and human rights, particularly with regard to HIV and other blood-borne infections and sexual health. She is the current President of the Australian Federation of AIDS Organisations (AFAO), the federation for the community-based response to HIV in Australia. Bridget has a strong commitment to community-based health responses and prior to academia was involved with HIV and sexual and reproductive rights for more than 20 years as an advocate, editor, journalist and policy analyst. She completed her masters and PhD at Sydney Health Ethics.

Wednesday 31 October 2018
12pm – 2pm
A light lunch will be served at the beginning of this event.

Footbridge Lecture Theatre
Holme Building A09
The University of Sydney
NSW 2006
View the location in Google Maps
RSVP: Registration is free, but essential by 20 October for catering purposes –
REGISTER NOW

The Unspoken Limits of Liquid Biopsies

By Ainsley Newson

This article was originally published in Australasian Science and is reproduced with permission. It can be cited as Newson, A (2018) The Unspoken Limits of Liquid Biopsies. Australasian Science, 39(4): 49. Retrieved from: http://www.australasianscience.com.au/article/issue-julyaugust-2018/unspoken-limits-liquid-biopsies.html
Ainsley DNA-test

Photo of a test tube containing bubbles forming a double helix. Credit: Connect World/Amazon

Liquid biopsies promise early detection of cancer, but some of their current limitations risk being overlooked.

Many of the difficulties in efforts to reduce cancer incidence and deaths arise because we don’t yet have reliable ways to effectively identify, pinpoint and treat it in its early stages.

But what if there was a blood test that could pick up a range of early cancers, show where tumours might be and suggest the best treatment? Sounds amazing, doesn’t it?

The exciting thing is that researchers are making some headway in identifying cancer-specific DNA sequences and proteins from blood samples: a so-called “liquid biopsy”.

The technology is based on the knowledge that cancer tumours shed mutated DNA. If an over-abundance of certain DNA sequences is detected in our blood, this suggests there could be a tumour. The hope is that one day there will be a single blood test that could be used to routinely screen anyone in the population.

One study published in Science in January showed promising results, including a false-positive rate (where a healthy person’s sample erroneously suggests cancer) of less than 1%. But because we don’t yet know enough about the required DNA markers, it was better at detecting some cancers (such as ovarian cancer) than others (such as breast cancer). This work is now being extended to a bigger trial.

It’s a lucrative area with a potentially enormous market. There is significant start-up funding being invested, and even more media hype. A US company even took a test to market a couple of years ago, although this was swiftly met with a stern warning letter from the US Food and Drug Administration.

But let’s not get ahead of ourselves. As the authors of another review paper pointed out in March, this test is by no means ready for population-wide roll-out. And even if we get to the point of a fantastic test that correctly identifies and pinpoints tumours within all scientifically important parameters, these may not necessarily be cancers that need to be found. Liquid biopsy could suffer the same problem that befalls many current cancerscreening technologies: while we are getting much better at finding tumours, we are much less good at working out which ones need to be treated and which can be left alone.

Overdiagnosis is said to occur when a test or screen makes a true finding (i.e. not a false-positive) but whatever was identified never needed to be found because it would not have developed further. Conversations about overdiagnosis following cancer screening are not easy. If we hear the word “cancer” our (understandable) reaction is to want it gone immediately.

However, overdiagnosis causes problems because people are given treatments that they don’t need, including treatments that cause harm and cost the health care system money (which in turn impacts access to care down the line). But, it is often hard to tell in advance who needs treatment and who doesn’t.

Overdiagnosis is being talked about by some commentators on liquid biopsy, but it’s notable in its absence from exuberant media releases extolling progress in liquid biopsy research. Some also think it’s their right to demand access to unproven tests or treatments, and see any move to prevent this as medical paternalism or denial of treatment. Yet those responsibly for publicly funded health care are likely to want greater reassurance before committing resources. At the same time, it is terrible when a progressive cancer is missed in a patient when the prognosis would have been better if it was found and treated early.

As a DNA-based technology, and given the significant hype that currently surrounds all things genetic, liquid biopsy may give populations a false sense of security. Its perceived precision may make public conversations about overdiagnosis difficult. We are conditioned to seek information rather than not, we search for our own health information online, and are usually keener to do something rather than “watch and wait”.

How good should a test be before it is introduced to the wider population? Should we discuss not testing? For how long should we measure patient outcomes before rolling a test out to healthy people in a world increasingly less willing to wait? Should we discuss not intervening?

Liquid biopsy won’t give us these answers, but the questions are sure to come around soon.

 

Ainsley Newson is Associate Professor of Bioethics and Deputy Director of Sydney Health Ethics at the University of Sydney.