A/Prof. Morgan Carpenter1, Dr Bridget Haire2, Ms Velissa Aplin3, Dr Aileen Kennedy4, Prof. Ainsley Newson1
1Sydney Health Ethics, University Of Sydney, , Australia, 2School of Population Health, Kirby Institute and Australian Human Rights Institute, UNSW, , Australia, 3Canberra Health Services, , Australia, 4Faculty of Law, UTS, , Australia
Biography:
Ainsley Newson:
Ainsley Newson is Professor of Bioethics at the University of Sydney. Trained in bioethics, law and science, she has worked in bioethics for over 25 years and has held multiple continuing teaching/research positions in Australia and the United Kingdom. Ainsley’s research focuses on ethical aspects of genomics and related health technologies. Her internationally recognised research critically considers how these technologies should be used well, in research, clinical and population health settings. Her research has generated over 200 academic, policy and general interest publications, and she sits on a range of committees that deliberate bioethics issues in a policy context.
Morgan Carpenter:
Morgan Carpenter, PhD, is an Associate Professor at Sydney Health Ethics, in the University of Sydney School of Public Health. Morgan is an internationally recognised expert on human rights and ethics in relation to the treatment of people with innate variations of sex characteristics. Morgan is also the Executive Director of Intersex Human Rights Australia, a charity that promotes the health and human rights of people with innate variations of sex characteristics through advocacy and psychosocial support services. He is an inaugural member of the Australian Capital Territory’s new Restricted Medical Treatment Assessment Board, and a member of advisory boards or expert reference groups for the New South Wales government, Australian Department of Health and Aged Care, and Australian Bureau of Statistics.
Aileen Kennedy:
Dr Aileen Kennedy is a leading national and international scholar on Australian law relating to sex and gender, with a specific focus on research and advocacy on intersex human rights law. She joined the UTS Law Health Justice Research Centre in April 2023 as a Chancellor’s Research Fellow. As the Chair of Intersex Human Rights Australia and a member of the LGBTIQ+ Committee of Australian Lawyers for Human Rights, Kennedy is at the forefront of developing and shaping policy and knowledge about social justice and human rights for people with innate variations of sex characteristics.
Bridget Haire:
Associate Professor Bridget Haire is an empirical bioethicist working in public health ethics and bioethics at UNSW. She conducts research in the areas of HIV and other blood-borne infections, sexual health and emerging infectious diseases. Bridget was president of the Australian Federation of AIDS Organisations from 2015-18 and UNSW’s LGBTQIA+ Diversity Champion from 2019-20. She co-edits the journal Research Ethics, and is an associate of the Australian Human Rights Institute. Bridget is an academic co-lead of UNSW Community of Practice for Queer and Trans people, and People with Variations of Sex Characteristics (Intersex) and is passionate about human rights in healthcare.
Velissa Aplin:
Velissa Aplin is a Social Worker working as the Coordinator of the Variations in Sex Characteristics Psychosocial Service in Canberra Health Services and recently commenced in the role of Profession Lead for Social Work in Canberra Health Services. Velissa is passionate about working together with people who have lived experience, to improve the psychosocial support and care coordination for children who have a variation in sex characteristics and their families. Velissa is also an experienced clinician, leader, trainer and consultant in mental health and trauma informed care. Velissa is committed to embedding psychosocial support as a primary role in healthcare and working with systems to make the changes to achieve this.
Abstract:
In 2023, the Australian Capital Territory (ACT) was the first Australian jurisdiction to legislate to regulate the medical treatment of children with innate variations of sex characteristics (intersex/differences of sex development; “IVSCs”). This reform addresses longstanding rights-based concerns arising from unnecessary medical interventions on children with IVSCs. Such interventions are often justified by gender stereotypes relating to genital appearance and function. The reforms introduce a new independent assessment board for contentious medical interventions, with transparency about the numbers and types of procedures authorised.
In an associated development, ACT Health has established a new paediatric service providing psychosocial support and care coordination for children with IVSCs and their families.
This panel will critically consider the landscape that led to these developments; progress, barriers, research, risks and benefits, and implementation. It will ask:
* Should other jurisdictions follow suit?
* How can healthcare and research be more responsive to the needs and wishes of people with IVSCs?
The panel will be facilitated by Ainsley Newson (Sydney Health Ethics), with 4 speakers (10 minutes/speaker) and 20 minutes for discussion.
Velissa Aplin (Canberra Health Services) is the Care Coordinator in the ACT’s new psychosocial service. She will speak about the work of the service, implementation challenges and benefits.
Aileen Kennedy (UTS Faculty of Law) will introduce the ACT’s new legal developments.
Morgan Carpenter (Sydney Health Ethics) and Bridget Haire (School of Population Health, Kirby Institute and Australian Human Rights Institute, UNSW) will discuss Australian bioethical approaches, known gaps and new research goals.