Models of Care for People with Intersex Variations

People with intersex variations are those born with sex characteristics that differ from the stereotypical notions of male or female. Intersex individuals face a range of issues throughout their lives beginning with ‘normalising’ surgeries in early childhood which can render them infertile and breach their rights to bodily integrity, autonomy and self-determination. It is vital to address the rights and needs of intersex people, including the right to make personal choices surrounding treatments, the right to be free from discrimination, and the right to bodily integrity.

Following a competitive process, the University of Sydney with Intersex Human Rights Australia (IHRA), Canberra Health Services, University of Technology Sydney, and academic and community research partners, have been awarded a new grant for the purpose of improving the health and wellbeing of people with intersex variations (also termed innate variations of sex characterists (IVSCs), or differences of sex development).

The research project will be led by Dr Morgan Carpenter (University of Sydney and IHRA) alongside Dr Aileen Kennedy (University of Technology Sydney and IHRA) and Bonnie Hart (University of Southern Queensland, IHRA and InterLink).

“It is groundbreaking to have a large well resourced research project led by investigators and organisations with lived experience as well as academic and research expertise. The emphasis on psycho-social support and the development of much-needed bioethical standards and protocols will promote the genuine interests and needs of an over-medicalised but under-research community” 

– Dr Aileen Kennedy, University of Technology Sydney and Chair of Intersex Human Rights Australia

Research Aims

The project will engage in long sought-after work to:

• Transform models of care from narrow biomedical approaches centred on early surgical and endocrinological interventions to “manage” IVSCs, to practical multidisciplinary approaches that centre psychosocial support, to address stigma and misconceptions, support families, and help individuals to determine and express their own values and preferences regarding all forms of non-urgent medical treatment.
• Improve understanding of the health and well-being needs and experiences of adolescents and adults with IVSCs, including those that are hard to reach due to negative experiences of healthcare, and those with intersectional disadvantages.
• Undertake research that addresses community priorities and expectations, and that is community-based, participatory, and human rights-affirming.
• Build the capacity and capability of the research community to undertake research and translational work relevant to the health needs of people with IVSCs.

Project Components

To achieve these aims, the project includes three components:

1. The development and evaluation of clinical and peer-led models of care at the Australian Capital Territory’s new hospital-based psychosocial support service and in the national InterLink peer-led service.
2. Mixed methods resource to better understand the needs and circumstances of adults and adolescents with IVSCs.
3. Development of new bioethical frameworks to support co-designed, ethically defensible models of care, facilitating timely access to appropriate healthcare across the lifespan.

Project Partners and Commentary

Project partners are the University of Sydney, Intersex Human Rights Australia, Canberra Health Services, University of Technology Sydney, Australian National University, University of Southern Queensland, UNSW, La Trobe University, University of Western Australia, Telethon Kids Institute, University of Canberra, Intersex Peer Support Australia, and A Gender Agenda. 

Comments by Dr Morgan Carpenter, the Grant’s Chief Investigator-A:

“The awarding of this grant through a competitive process is an indication of the public policy interest in work to transform models of care to better serve the needs of people with innate variations of sex characteristics and our families. Our dream team brings together clinicians and hospital services, community organisations and academics to undertake three exciting and interconnected new pieces of work. We will evaluate and strengthen Australia’s new community and hospital centres of expertise in psychosocial support. We will undertake basic, long-needed research to fill gaps in knowledge about the health and wellbeing of adolescents and adults with innate variations of sex characteristics. We will develop new ethically-defensible bioethical approaches to the treatment of people with innate variations. These will help to drive improvements to healthcare and its management, ensuring that health and wellbeing needs are effectively met in a timely way, but also ensuring that treatment practices respect fundamental human rights norms and community expectations.”

Comments by Dr Bridget Haire, UNSW Sydney:

“The awarding of this grant is historic, with the research team led by academics with lived experience and every aspect of the partnership between researchers, community groups and clinicians foregrounding the voices of the people living with innate variations of sex characteristics. This program of research will promote human rights and best practices in community-led research collaborations”