Sydney Health Ethics considers the ‘ins and outs’ of My Health Record

Dr Cynthia Forlini, Research Fellow (editor)
By 15 November 2018, Australians with Medicare coverage will have to decide whether they want to opt out of My Health Record (MHR), an online centralized summary of personal health information. If they have not opted out before then, an electronic health record will be automatically created. Those, like me, who are enrolling in Medicare as adults or even on behalf of children, will have the chance to opt in through the medicare enrolment form. Whichever scenario applies, MHR gives us pause for thought about our health and the significance and meaning of the data it generates.

How are people deciding whether to have a MHR, or not? An analysis of the public-facing content of the MHR website showed that the reading level is too high for the general Australian population, which could limit accessibility for those with low literacy levels and difficulty communicating in English. A recent qualitative study reports that a sample of Australian women registered for MHR based on the benefits of having a digital health record that could be accessed by multiple providers but these benefits did not transpire in practice. These findings raise questions about whether Australians are accessing all the necessary information to make decisions about MHR, but also their expectations for how MHR might benefit their healthcare.

The emergence of this data alongside the looming deadline to opt out of MHR has sparked debates within the walls and listserv at Sydney Health Ethics. In this post, members of Sydney Health Ethics share their reflections on the ethics and practicalities of having a government-led electronic health record.

Why do we need electronic medical records?
Prof Lyn Gilbert

An ideal universal electronic health record (eHR) system could provide significant benefits for individual healthcare, health service improvement, disease surveillance and public health outcomes.

Let’s imagine an ideal system:

It would contain an individual’s health records from birth to death: including immunisations; GP and specialist clinical notes (including relevant family, occupational and travel history; results of laboratory investigations and imaging (or links to laboratory/radiology information systems); medications and allergies (or links to pharmacy information systems); hospital discharge summaries; next-of-kin contact details; and advanced care directives.

Access to such a system would be via a password provided by the individual patient/data owner with the potential for it to be over-ridden under well-defined circumstances, e.g. in an emergency, by a healthcare provider whose identity would be recorded and who would therefore be accountable. It could incorporate health alerts or reminders and personalised decision support systems. And the patient would be able to access and, if necessary, correct or delete some aspects of the data.

Such a system would integrate, and make rapidly accessible to health care providers, information that currently exists, for most of us, in many separate systems: immunization registers; GP and hospital eHRs; medical and pharmaceutical benefits scheme (MBS, PBS) and private health insurance databases; private and public laboratory and radiology information systems.

It could eliminate unnecessary duplication of laboratory investigations and imaging; reduce unnecessary polypharmacy; warn of dangerous medication errors or interactions. It would provide GPs with information required to provide continuing care after a hospital admission and allow hospitals to monitor rates of post-discharge adverse events (and implement improvements to reduce them).

There would be innumerable legitimate uses of “de-identified” (if at all possible) data for surveillance and research e.g. to improve health service delivery and treatment outcomes; monitor disease epidemiology and devise preventive strategies. Currently, linkage of existing databases is time consuming and expensive and a significant barrier to surveillance and research.

It is obvious from the recent public debate that, in its current form, MHR is far from ideal. I suspect that such a system is still a long way off.

MHR Fail: Not what it is but how it’s done
Jay Lee, Centre Administrator

On Monday 16 July, the first day of opting out period for MHR, I was shocked to learn from a colleague about MHR for the first time. The first question that popped in my head was that, for a project of such importance with potentially huge impacts on the lives of millions of Australians, why haven’t I heard of this earlier? I haven’t been living under a rock. I have taken public transport and I’m on Facebook every day like many other people.

I started researching. Imagine how many lives can be saved if patients’ medical history is easily accessible during emergencies, or throughout the treatment of a serious illness when different specialists or health care providers are involved?

However, I opted out the next day. What I have problem with is not the intention of having my medical history stored in one place for my benefit. My problem with is how it’s being done. Here are the red flags I see with MHR:

Centralisation. The complete medical history of millions of people stored in a centralised system is a recipe for cyber security disaster. Remember Equifax credit data hack in US, Singapore’s health database stolen including their own PM’s, and the Australian Red Cross donor details leaked in our own backyard? The answer to this is readily available via blockchain technology. What MHR should have adopted is decentralised blockchain technology that is almost impossible to hack through the notion of distributed ledgers.

Trust. Why haven’t we been given the opportunity of opting in instead? Judging from past history, I am not convinced that policies will not change without notice. It is already said that MHR records are to be made available to insurance companies.

Considerations for an ageing population
Emeritus Prof Miles Little
Age, significant ongoing medical problems and potentially fatal allergies make me much more sympathetic to the concept of the MHR. So does my experience of practice – albeit many years ago. Despite the great advances in communication and connectedness, there remain problems for some people who need medical access in places outside their usual environment. I have the usual misgivings about data breaches and the embarrassment and discrimination they could bring against many people. I am even more troubled by the Australian habit of strangulation by bureaucracy, and would not expect this to evolve smoothly or expeditiously. Each person, however, has their own context, physical, moral and political, and their own level of trust – or, rather, level of distrust – in governance. If you think you might need it, stay in. If your level of distrust is high enough, you still can opt out.

Stigma, intersex people, and the My Health Record
Morgan Carpenter, PhD Candidate
Stigma and discrimination distort access to healthcare and are sometimes used to justify otherwise unnecessary medical interventions. For an intersex population, forced and coercive practices such as surgeries to “enhance” genital appearance in young children persist. My Health Record creates risks relating to the disclosure of health information to new parties. On an individual level, some people already report unnecessary questioning, examinations and discriminatory practices after disclosing an intersex variation to a healthcare provider. At a population level, differing clinical and community research priorities raise concerns about secondary data from My Health Records being used to justify early surgeries and facilitate genetic de-selection, instead of identifying long-term outcomes, tackling stigma in access to healthcare, and documenting human rights violations.

Continuity of care equals continuity of health records
Dr Narcyz Ghinea, Research Fellow
While privacy concerns are real, so are the potential benefits of having health records stored in a singular location. Continuity of care is a major challenge in a largely fragmented health system. Patients often shuffle between different specialists and GPs, between different medical centres, between the public and private system, and between the hospital and community settings. The transfer of accurate information between these points of contact with health care providers is crucial for optimum care. An integrated and patient-centric health care journey goes hand in hand with an integrated information system that is not siloed according to administrative units. For young, healthy individuals who speak English fluently, this may seem much ado about nothing. However for patients suffering multiple co-morbidities, who are on multiple medications, or who can’t communicate well in English, a central health record is invaluable. Take for instance the case of a patient who has collapsed at home, doesn’t speak English, and is rushed to the emergency department in an ambulance. It may be some time before such a patient can give doctors an accurate medical history, which can mean the patient may miss out on critical medicines they are currently on, may be overdosed due to a double up, or may be given a medicine that interacts severely with other medicines the patient is currently taking. Having all this information in an online health record can save much unnecessary angst at these transitions of care, and is certainly superior to the ad hoc manner in which this information must otherwise be collected – such as trying to call the patient’s GP, hoping they are available, and assuming the GP has an accurate record themselves.

 

The Australian Senate’s Community Affairs Committee held an inquiry into My Health Record. You can read the recently released report here.

Image by rawpixel on Unsplash

Journal of Bioethical Inquiry, 15(3)

Journal cover, purple background with transparent biological material and the journal titleThe Journal of Bioethical Inquiry is a forum for discussing and debating ethical, cultural and social issues arising in medicine, the health sciences and health care in general. Coverage includes core areas of conventional bioethics, such as research, clinical practice and medical technology. The journal also addresses questions of pressing contemporary relevance, such as the implications of current world events for the health of populations, and critical analyses of specific social policies around the world and their likely impact on health and welfare and systems of power. Volume 15 Number 3 is now available online.

Editorial
Embedded Journalists or Empirical Critics? The Nature of The “Gaze” in Bioethics.
Michael A. Ashby & Bronwen Morrell

Recent Developments
Social Media: The Unnamed Plaintiff
Bernadette J. Richards

Critical Response
Forget Evil: Autonomy, the Physician–Patient Relationship, and the Duty to Refer
Jake Greenblum & T. J. Kasperbauer

Critical Perspectives
Parental Moral Distress and Moral Schism in the Neonatal ICU
Gabriella Foe, Jonathan Hellmann & Rebecca A. Greenberg

Critical Perspectives
Ethical Issues of Using CRISPR Technologies for Research on Military Enhancement
Marsha Greene & Zubin Master

Symposium: Collective Representation in Healthcare Policyy
One For All, All For One? Collective Representation in Healthcare Policy
Karin Jongsma, Nitzan Rimon-Zarfaty, Aviad Raz & Silke Schicktanz

Symposium: Collective Representation in Healthcare Policy
Representing Whom? U.K. Health Consumer and Patients’ Organizations in the Policy Process
Rob Baggott & Kathryn L. Jones

Symposium: Collective Representation in Healthcare Policyy
Legislating Patient Representation: A Comparison Between Austrian and German Regulations on Self-Help Organizations as Patient Representatives
Daniela Rojatz, Julia Fischer & Hester Van de Bovenkamp

Symposium: Collective Representation in Healthcare Policy
Representative Claims in Healthcare: Identifying the Variety in Patient Representation
Hester M. van de Bovenkamp & Hans Vollaard

Symposium: Collective Representation in Healthcare Policy
Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel
Silke Schicktanz, Nitzan Rimon-Zarfaty, Aviad Raz & Karin Jongsma

Symposium: Collective Representation in Healthcare Policy
Mitochondrial Replacement Techniques
Jacquelyne Luce

Symposium: Collective Representation in Healthcare Policy
Are ME/CFS Patient Organizations “Militant”?
Charlotte Blease & Keith J. Geraghty

Original Research
Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective
Lisa Eckstein & Margaret Otlowski

Original Research
Medicolegal Complications of Apnoea Testing for Determination of Brain Death
Ariane Lewis & David Greer

Original Research
Commodification and Human Interests
Julian J. Koplin

Original Research
Attitudes Towards the Donation of Human Embryos for Stem Cell Research Among Chinese IVF Patients and Students
Achim Rosemann & Huiyu Luo

Original Research
Responsibility as an Obstacle to Good Policy: The Case of Lifestyle Related Disease
Neil Levy

Original Research
Why Do Medical Professional Regulators Dismiss Most Complaints From Members of the Public? Regulatory Illiteracy, Epistemic Injustice, and Symbolic Power
Orla O’Donovan & Deirdre Madden

Should there be sub-specialties in bioethics? To split or not to split…

Looking down at shoes and legs from above, left foot is on plain red carpet, right foot is on brightly patterned carpet

Credit: Joshua Coleman

By Cynthia Forlini, Wendy Lipworth, Ainsley Newson (who all contributed equally)

In May 2018, Wendy gave a seminar at our Centre on whether there was more than one way of ‘doing’ bioethics. She talked about the ongoing phenomenon of splitting bioethics scholarship into sub-specialties.

This question arose for her because she had been grappling with how to pull together her many research interests into a coherent narrative, with the goals of developing a productive research program and progressing in her career (e.g. having a story to tell in grant and promotion applications). Specifically, Wendy was wondering whether she can and should construct a new sub-specialty of bioethics in pharmaceutical ethics, given that this theme seemed to connect many of her interests.

This got us all talking, because it turns out that each of us had had a similar experience, at various points in our careers, across three continents. Each of us identifies with mainstream bioethics, but can be said to work in a sub-specialty that addresses a distinct subject matter. Wendy’s work seems to coalesce around issues to do with therapeutics, Cynthia’s expertise lies in neuroethics, and Ainsley has spent a very long time thinking about ethics and genetics.

At the same time, we also realised that despite our different day to day domains of application, many similar concepts underpin our work, which led us to wonder: what’s the point of naming a sub- specialty if we are all working on similar concepts?

So, we came together over a glass of wine to think through the pros and cons of having sub-specialities in bioethics. This is not a new issue, but we thought it was worth re-inventing the re-invented wheel, in the hope of gaining some traction this time.

In her talk, Wendy referred to a 2007 paper by Fritz Allhoff that she found helpful. Allhoff makes a useful distinction between what he called ‘metaphysical splitting’ (which is the claim that these things are somehow new or different) and ‘pragmatic splitting’ (which entailed paying attention to particular things even if they are not really unique). Wendy also drew on some of her earlier work on exceptionalism in evidence-based medicine, biobanking and big data that showed that there are both advantages and disadvantages of viewing emerging phenomena as different from existing ones.

Over the course of our evening, we discussed some of the key claims for and against splitting bioethics (aka creating sub-specialties). These resonated with our collective experience of navigating specific areas of interest within mainstream bioethics.
Arguments for metaphysical splitting basically collapse into arguments that things are new, and therefore warrant special attention. This novelty might stem from:

  • a new practice or scientific technology that needs examination (e.g. gene editing);
  • a new scale or urgency of an existing issue (such as privacy issues associated with “big data” and machine learning);
  • a new moral problem (such as free will in neuroethics) or form of moral argumentation (such as the claim in public health ethics that the hegemonic status of individualism should be challenged); or
  • a new meta-ethics (e.g. in neuroethics where you think about how brains “do ethics”)

The primary claims against (naïve or unjustified) metaphysical splitting are that it:

  • draws false distinctions, and thus sacrifices richness and depth of scholarship;
  • precludes opportunities for cross-fertilisation of ideas;
  • gets confusing, as people use different terms to mean the same thing;
  • can entrench blind spots, because scholars cannot see that they have common concerns;
  • legitimates hype by portraying issues as being new and different; and that it
  • obscures the opportunity to actually identify any real differences.

It could be argued that, even if a phenomenon is not really new or different, there is still benefit in acting as though it is and paying special attention to it (i.e. pragmatic splitting). Pragmatic splitting is supported by claims that it is impossible for us to be across every issue, concept and theory. Focusing on a particular sub-specialty allows us to gain expertise of that speciality and acquire the necessary deep knowledge (including practical or policy knowledge) to do high quality research.

Being a specialist also, for better for worse, allows us to attract funding and be known for a particular domain of work. Further, we all come from ‘somewhere’ and we bring with us our disciplinary footprints.

Claims against pragmatic splitting are that it tends to be driven by money, self-importance or ivory tower interests rather than genuine need. It can treat certain issues exceptionally, such as how genetic information should be managed. This isn’t an argument against splitting so much as a perverse consequence of it. Pragmatic splitting also draws attention to certain things over others; and that attention can be misguided, such as devoting energy to arguing about the right to pay for cosmetic surgery when there are entrenched inequities in access to basic healthcare.

So where does this leave us?

We took away from this discussion that there is no one position here that is clearly superior—at least for the moment. If we do want to try to figure out an answer (and we weren’t quite in agreement about whether an answer is necessary or possible), then we will need to address several fundamental questions: What is bioethics for? What outcomes do we want it to achieve, and how? What kind of a field do we want to work in, and how might specialising help or hinder?

One thing we do agree on is that, if we do keep some ‘walls’ up in bioethics, it is important to take a peek over the top every now and then. If we don’t, we may miss opportunities for rich scholarship, where similar concepts and theories have traction across numerous specialties in bioethics. Each of us also might also be wise to reflect on our academic journeys (no matter how far along the road we are), and to question our intuitions and practices with respect to sub-specialties in bioethics.

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.

Associate Professor Wendy Lipworth is a bioethicist and health social scientist at Sydney Health Ethics, University of Sydney.

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

It’s not (just) about the money

By Miriam WiersmaIan Kerridge and Wendy Lipworth

This post originally appeared in August 2018 edition of the Research Ethics Monthly and is reproduced with permission. It can be cited as Wiersma, M., Kerridge, I. and Lipworth, W. (22  August 2018) It’s not (just) about the money. Research Ethics Monthly. Retrieved from: https://ahrecs.com/research-integrity/its-not-just-about-the-money

Let’s imagine for a moment that you are a mid-career university researcher with growing expertise in a particular field. A pharmaceutical company contacts you and says that it would like to recognise the important work you are doing in this area, and has asked you to choose among the following forms of recognition:

Black and white image of a laboratory hallway, glass doors in the distance

Credit: Bill Dickinson

  1. $10,000 towards a research project related to one of the company’s drugs.
  2. Being chosen as a Keynote Speaker to present at a prestigious conference, with no honorarium.
  3. Being invited to join an international advisory board.

What would you choose? Would you choose the money? Or is there something appealing about the acknowledgement of your expertise in Option B, or impressive status associated with Option C?

Perhaps simply contemplating these questions makes you feel uncomfortable. After all, as medical researchers, questioning what motivates our behaviour or actions beyond the pursuit of scientific knowledge is not exactly pleasant. We like to think that we act in a way that is free from bias – and that while other researchers may have conflicts of interest, we certainly do not. Or not at least conflicts of interest that matter. Which begs the question – what types of things create conflicts of interest (COI)? Is it only when money enters the equation, or are there other forces at play?

It would appear, from the emphasis placed on financial COIs by medical journals, conference organisers and professional societies, that only money matters (Komesaroff et al. (2012)JAMA (2017). The COI disclosure forms that we dutifully complete tend to focus on financial COI and are comparatively vague when it comes to the declaration of non-financial COI (if indeed such declaration is required at all). Similarly, the disclosure statements made by speakers at conferences tend to take the form of ‘Dr X received $$$ from Company Y, $$ from Company Z’ and on the list goes.

But we believe that this exclusive emphasis on money overlooks many other non-financial interests that can create significant COI. These may stem from personal or religious beliefs – for example, Christian views about the moral status of the embryo held by legislators and scientists undoubtedly played a major role in the securing the prohibition of public funding of embryonic stem cell research.

Non-financial COI may also arise from a researcher’s desire for status or respect. As the case study illustrates, pharmaceutical companies may utilise both financial and non-financial incentives to encourage industry collaboration and promote industry agendas.

Personal circumstances and relationships also have the potential to give rise to non-financial COI – for example, if a member of a drug regulatory agency had a close relative who could benefit from the subsidisation of a drug under consideration this would constitute an obvious non-financial COI. Interests such as these have long been recognised in other contexts, including in the public sector (Australian Public Service Commission (2017)OECD (2003)). The OECD Managing conflicts of interest in the public service guidelines state that any ‘forward looking’ policy should describe non-financial sources of COI – including non-financial personal interests and relationships (OECD). The Australian Public Service Commission also specifies that social relationships and personal interests should be declared by employees.

We argue that to overlook non-financial COIs is problematic for several reasons (Wiersma et al. (2018a)Wiersma et al. (2018b). Most importantly, disregarding non-financial COI ignores the fact that serious harm may arise from such conflicts. We need look no further than the notorious Tuskegee scandal (Toy (2017) or Guatemalan ‘research’ (Subramanian (2017) to see that the drive to satisfy scientific curiosity can not only cloud researchers’ judgement, but can also cause significant harm to (unwilling or unknowing) participants.

Furthermore, ignoring non-financial COI also fails to take into account the fact that financial and non-financial COI are frequently entwined. For example, recognition by the pharmaceutical industry as a ‘Key Opinion Leader’ is not only associated with financial remuneration (for example, speaker’s fees), but also status and prestige.

We have also argued that non-financial COI can be managed using similar strategies to those used to manage financial COI (Wiersma et al. (2018a) There is no reason, for example, that a person on a drug regulatory committee could not disclose that they have a relative with a medical condition that may benefit from the drug under consideration and recuse themselves from voting in relation to that particular drug.

Of course, given the highly personal nature of some non-financial interests, it is important that declaration should only be required when evidence indicates that these may lead to a non-financial COI. Here we can draw from the Australian Public Service Commission guidelines which state that a personal interest does not lead to a conflict of interest unless there is ‘real or sensible’ (not merely theoretical) possibility of conflict. It is also crucial that declarations are handled with discretion.

None of this is to disregard the difficulties in determining what precisely constitutes a conflict of interest in medicine and how these should be managed. Medical researchers and practitioners have long grappled with these questions, and heated debate as to what should or should not be considered a ‘COI’ and what types of COI should be managed continues to this day (Bero 2017, Wiersma et al. (2018b).

However, we believe that acknowledging the importance of non-financial COI may be the starting point for a more sophisticated approach to managing both financial and non-financial COI in health and biomedicine. Perhaps most importantly, by acknowledging that we are all conflicted in certain ways, and that having a COI is not necessarily ‘bad,’ we may be able to take some of the ‘sting’ out of the label. And this may, in turn, encourage open discussion and disclosure of both financial and non-financial COI, enhance our understanding of COIs in general, and help us develop and refine a more nuanced approach to all forms of COI.

References

Australian Public Service Commission (2017) Values and code of conduct in practice.Australian Government. Available from: https://www.apsc.gov.au/aps-values-and-code-conduct-practice

Bero, L. (2017) Addressing bias and conflict of interest among biomedical researchers. JAMA: The Journal of the American Medical Association, 317(17): 1723-4.

JAMA: The Journal of the American Medical Association (2017) Conflict of interest theme issue. JAMA: The Journal of the American Medical Association, 317 (17):1707-1812. Available from: https://jamanetwork.com/journals/jama/issue/317/17

Komesaroff, P., Kerridge, I. & Lipworth, W. (2012) Don’t show me the money: the dangers of non-financial conflicts. The Conversation. March 30. Available from: https://theconversation.com/dont-show-me-the-money-the-dangers-of-non-financial-conflicts-5013

OECD (2003) Managing conflict of interest in the public service. OECD guidelines and country experiences. Organisation for Economic Co-operation and Development. Available from: http://www.oecd.org/governance/ethics/48994419.pdf

Subramanian, S. (2017) Worse than Tuskegee. Slate26. Available from: http://www.slate.com/articles/health_and_science/cover_story/2017/02/guatemala_syphilis_experiments_worse_than_tuskegee.html

Toy, S. (2017) 45 years ago, the nation learned about the Tuskegee Syphilis Study. Its repercussions are still felt today. USA Today. Available from: https://www.usatoday.com/story/news/2017/07/25/tuskegee-syphilis-study-its-repercussions-still-felt-today/506507001/

Wiersma, M., Kerridge I. & Lipworth, W. (2018a) Dangers of neglecting non-financial conflicts of interest in health and medicine. Journal of Medical Ethics, 44: 319-322. Available from: https://jme.bmj.com/content/44/5/319

Wiersma, M., Kerridge I. Lipworth, W. & Rodwin, M. (2018b) Should we try and manage non-financial interests? British Medical Journal, 361: k1240. Available from: https://www.bmj.com/content/361/bmj.k1240

Conflicts of interest: All authors had financial support from the National Health & Medical Research Council (NHMRC, grant number APP1059732) for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.

Miriam Wiersma is a PhD candidate at Sydney Health Ethics, University of Sydney, studying biomedical innovation.

Ian Kerridge is Professor of Bioethics and Medicine at Sydney Health Ethics, University of Sydney, and a Haematologist/Bone Marrow Transplant Physician at Royal North Shore Hospital.

Associate Professor Wendy Lipworth is a bioethicst and health social scientist at Sydney Health Ethics, University of Sydney.

Image by Bill Dickinson and used under Creative Commons 2.0

 

Mark the national day of action for refugees at University of Sydney

Cover image from "No friend but the mountains"rouz Boochani

“It is only when our theoretical positions are put into practice that we can know their profundity.”

—Behrouz Bouchani, No Friend but the Mountains

We invite you to an event organised by Academics for Refugees at the University of Sydney as part of a national day of action on WEDNESDAY 17 October. From 11 am to 1pm, in front of Fisher Library, staff from the university will conduct a public reading of short passages from the brilliant, ground-breaking book NO FRIEND BUT THE MOUNTAINS by Iranian journalist, Behrouz Bouchani.

Bouchani is one of the asylum seekers currently marooned on Manus Island by the Australian Government, after years of administrative detention. His book was composed in a series of text messages that have been translated by Sydney University academic, Dr Omid Tofighian.

There will be a group photo at 1pm to send a message of hope and support to the men, women and children who are who are struggling as a result of an increasingly harsh and harmful system of immigration detention.

This will be a great opportunity to hear about the conditions on Manus Island directly from the source. There will also be an opportunity to engage in ongoing campaigns, find out about forthcoming actions, and meet with colleagues who are pursuing justice, human rights and essential services for asylums seekers and refugees.

These rights can be secured only by a broad social movement in Australia. And there is more going on in this space than many of us realise. Come along and find out.

Organised by Louise Boon-Kuo (Law School), Vivian Honan (Department of Indonesian Studies), Chris Jordens (Sydney Health Ethics)

If you can’t join us, please take action on your own campus – check out Academics for Refugees – and follow events across across the country via Twitter:

#NoMoreHarm
#EndOffshoreProcessing
#EducationNotDetention
#EndMandatoryDetention
#AcademicsForRefugees

 

 

 

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