By Morgan Carpenter
First posted 25 May 2012 on Intersex Human Rights Australia. Content last reviewed 14 April 2021
Photo: Intersex panel participants at the Health in Difference conference, 2018. We don’t share in common the same chromosomes, birth sex assignment, gender identity. Some of us are queer and some of us are not. Some have changed sex classification and others have not.
How can intersex people be included effectively in research studies and surveys? Intersex Human Rights Australia receives a large number of requests to promote and distribute research surveys seeking intersex participants, and also requests for research subjects. We need high quality research that addresses the needs and circumstances of people with innate variations of sex characteristics, and we favour community-based participatory research that recognises and responds to those distinct concerns. The following principles set out our policy and guidance on studying this population.
Research priorities
Current research on intersex populations frequently suffers from framing effects. Clinical research predominantly focuses on infants, children and adolescents, with limited research on adults and a lack of long-term outcome data:
“Available clinical data lacks adequate sample sizes, independence, and often lacks relevant control groups. It is often framed around clinical preoccupations with, for example, genital appearance, heterosexuality, and gender conformity” (Carpenter 2018)
At the same time, research on LGBTQ/LGBTIQ sexual and gender minorities frequently presumes particular experiences of sexuality and gender non-conformity, and focuses on their implications for adult populations.
These approaches have incommensurate, and sometimes contradictory, beliefs about the needs and characteristics of intersex people, with consequences for data quality and interpretation. Neither approach is firmly grounded in the needs of people with intersex variations.
Our research priorities are set out in a limited way in the 2017 Darlington Statement, a community consensus statement by organisations and individuals in Australia and Aotearoa New Zealand:
“30. We call for more research, including clinical, sociological and psychological research, led by community input. Clinical research, including longitudinal research, requires true, non-medicalised controls” (AIS Support Group Australia, et al. 2017)