First national survey of intersex Australians

Published 21 May 2015

A senior researcher from the University of New England has launched the first Australia-wide survey intended to give direct voice to intersex people.

The survey explores participants’ social health, education and life experiences and is open to people with a broad range of congenital sex variations whether hormonal, chromosomal or biological.

UNE academic, Dr Tiffany Jones, developed the survey to meet the need for larger-scale Australian research data.

“The survey can take as little as 15 minutes to complete, however several participants have already chosen to devote much more time to respond in great detail,” Dr Jones said.

“It offers a chance to make their voice heard on key issues, and to tell their own story using their preferred terminology and perspectives.”

Collaborators in the project are Morgan Carpenter of Organisation Intersex International (OII) Australia, Bonnie Hart of The Androgen Insensitivity Syndrome (AIS) Support Group Australia, and Dr Gávi Ansara of the National LGBTI Health Alliance.

“As president of OII Australia, I’m delighted to support and recommend this survey to Australian residents born with variations in sex characteristics,” Morgan Carpenter said.

“To date, almost all research on people with intersex variations has pathologised intersex differences as something needing to be “fixed”, or it has conflated intersex experiences with LGB and transgender issues. This research allows us to test some of those preconceptions, and we’re confident that it’s the most respectful, thoughtful and relevant Australian study yet on the needs, circumstances and histories of people born with atypical sex characteristics.”

The National LGBTI Health Alliance’s Executive Director Rebecca Reynolds supports the survey with equally strong words.

“We are proud to support research that has been developed through direct input from people with lived experience of intersex bodily diversity, as part of the Alliance’s commitment to promoting research ethics and standards in.

“This collaboration models by example the respectful, inclusive approach that we hope more members of academic and medical professions will adopt. We encourage people living with intersex variations in Australia to share your voices and help us to make the changes you want to see in your services, schools, and communities.”

Data from the survey will be used to provide direct story-sharing and self-representation opportunities for community members as well as give guidance to improve health, education and social services.

Volunteers with congenital sex variations aged 16+ are now called to complete the anonymous online survey.

Dr Tiffany Jones can be contacted with any questions about this research by email at or by phone on 02 6773 3716