OII Australia has historically received a large volume of requests for research subjects, and requests to promote research surveys seeking intersex participants. While we wish to help in any research that benefits people with intersex variations, we have had to issue advice on intersex inclusion, and implement the following policies in respect of such requests.
Advice on effectively including intersex
Avoid misgendering intersex people
To avoid misgendering people with intersex variations (describing our gender identities inaccurately) we recommend removing intersex from questions about sex or gender, and asking a separate question about intersex status.
When/if you ask about sex or gender, such a question should support non-binary options, such as “X”, used in Commonwealth government guidelines on the recognition of sex and gender. We also recommend supporting multiple choice answers for questions on sex or gender.
Avoid false positives
To help avoid including people who mistake intersex for a non-binary gender identity, we recommend adding a short descriptive statement to a separate question on intersex status.
Suggested survey question
To avoid misgendering and false positives, a suggested question on intersex status could read:
Intersex is a term for people born with congenital differences in sex characteristics. Are you intersex? Yes/No
Or
Intersex is a term for people born with congenital differences in sex characteristics. Do you have an intersex variation? Yes/No
Adopting this approach will help to prevent false negatives, and failures to commence or complete a survey.
Ensure survey relevance
If a survey is predicated only on issues of sexual orientation and/or gender identity then it is not being inclusive of intersex people. To ensure inclusivity in Commonwealth anti-discrimination law, the Australian government added a new “intersex status” attribute along with other attributes to the Sex Discrimination Act in 2013. A similar reframing of goals and parameters may be necessary in your study.
Useful information
The 2014 study From Blues to Rainbows shows how a lack of adequate framing and inclusion can lead to flawed results. The study by the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University handled this problem effectively in the final report.
From Blues to Rainbows
The OII Australia guide to making services intersex-inclusive provides advice on service access and service delivery which are relevant to research studies.
Making your service intersex-friendly
Policy on research studies
Background research
There is a large volume of research on intersex people, including more than 60 years worth of medical studies, and some smaller quantity of more recent LGBT/LGBTI research.
On the one hand, much of the medical research is known to suffer from selection bias and other methodological issues, it mainly focuses on our genitalia and other physical characteristics, and it frequently pathologises intersex people as subjects for treatment (including by framing intersex as “Disorders of Sex Development”).
On the other hand, we have been unable to usefully reference any LGBT/LGBTI research, frequently due to inaccurate assumptions about intersex people that affect participation levels and responses. These include assumptions that intersex is a gender identity (typically a non-binary gender identity), or assumptions that frame our experience as one of transition, or same-sex attraction.
We are unable to support research studies that make inaccurate assumptions about intersex. If you are unsure how to frame your research appropriately, then please contact us early in the design process. We encourage early consultation.
- We commend this article on data collection and identification documents.
- We expect researchers to have at least familiarised themselves with the basic literature on intersex.
Disclosure and ethical oversight
The level of disclosure for such research is often high. Researchers should bear in mind that to continually and repeatedly disclose personal information at a high rate is an unreasonable impost on intersex individuals.
There exist adequate resources on this site, and other intersex-run sites, containing personal stories. Further information from OII Australia members should only be sought if the research is significant and will contribute to the wellbeing and greater understanding of intersex people and issues.
The level of supervisory and ethical oversight for research projects needs to be adequate for both researcher and participant. Research projects conducted by universities, government or similar institutions will have a board of ethics, privacy is guaranteed, unauthorised disclosure is protected by law, and an appeal process is available through standard complaint channels.
Study requirements
We will do our best to support research work conducted by people with intersex variations, and/or with intersex people participating in a study reference group.
We may not be in a position to support other research projects, unless:
- The study is framed in a way that reflects an accurate understanding of intersex, that will be respectful of the diversity of our members and the wider intersex community
- Rights to privacy are guaranteed
- There is free prior and fully informed consent
- Research results are made available to our membership
- Papers are able to be viewed without cost to those involved in the research
- The research has ethical oversight
- The research will benefit people with intersex variations.
We appreciate thought going into these issues before contacting us, and some explanation of how these requirements may be achieved if/when you contact us.
In contacting us, please also bear in mind that OII Australia is a voluntary organisation with a volunteer board and no paid staff.
Thank you for your understanding.