Call to include LGBTIQs in Australia’s national health research and ethics bodies


A leading doctor has called on the Australian Government to make sure sexual minorities and gender diverse people are included in the top councils and committees that govern medical research in Australia.

Currently, people with a disability and people of faith are among the groups with seats at these tables, but LGBTIQ people have not been identified as a group that is in need of recognition.

Dr James Allen of Australian LGBTIQ youth harm prevention charity The Orbona Foundation published an open letter to the Prime Minister this week, outlining his concerns that there is no person representing LGBTIQ people on either the Australian Health Ethics Committee or National Health and Medical Research Council.

Dr Allen also wants the federal government to ensure the inclusion of LGBTIQ people in the language used in the National Statement on Ethical Conduct in Human Research.

Dr Allen is also concerned about the lack of inclusion of LGBTIQ young people as a Priority Population in the National Framework for Protecting Australia’s Children.

Dr Allen has called on Australian Prime Minister Anthony Albanese to rectify the situation as a priority for his government.

“Queer People ought to have a voting representative on both the National Health and Medical Research Council and the Australian Health Ethics Committee,” Dr Allen wrote.

“Currently, they are not at the table when experimentation and research on them is discussed.”

QNews has reproduced the open letter below:

To: The Hon. Anthony Albanese, MP Prime Minister of Australia

Dear Prime Minister,

There is a big problem with the way our entire medical, health, tertiary education and research sectors approach People of Diverse Gender, Sex Characteristics and Sexuality.

The pinnacle body for research ethics in Australia has overlooked them.

That People of Diverse Gender, Sex Characteristics and Sexuality ought to have equal representation in, and enjoy the full benefits of, health and human research ethics, is self-evident.

In countries where homosexuality remains a criminal offence, they cannot. In Australia, they must.

The wonderful humans on the National Health and Medical Research Council (NHMRC) undertake enormous service for Australia.

We are eternally grateful. [But] Legislation establishing the Council neglects to include a member with expertise in the health needs of People of Diverse Gender, Sex Characteristics and Sexuality.

The Australian Health Ethics Committee (AHEC) create the ethics framework that applies to AU$1 billion of research grants annually.

The legislation establishing this committee provides representative categories such as a person with an understanding of the concerns of people with a disability and a person who has expertise in
religion.

The concerns of LGBTIQA+SB People are overlooked.

It appears that, for these reasons, LGBTIQA+SB people are substantially invisible in the National Statement on Ethical Conduct in Human Research.

Recognition in the National Statement on Ethical Conduct in Human Research would guarantee that research on Queer People is well designed and of sufficient statistical quality to be useful.

Research would only be initiated for the purpose of benefiting the Queer Community.

Turning to the contentious topic of children who self-identify as having a diverse gender. These children, their supportive parents, and their caring clinicians are all doing their best.

Every perspective that is grounded in the absolute long-term best interest of the child is calling for excellence in research to guide them. There is common ground here of love, empathy and concern.

I commend all who give this topic attention.

Australians will find unequal access to research ethics a deep concern.

Research bias is replicated throughout every field and profession. We must systematically assess and correct its pernicious effect.

The most terrible of which, in my view, is the failure to identify LGBTIQA+SB children as a Priority Population in the National Framework for Protecting Australia’s Children.

Queer People ought to have a voting representative on both the National Health and Medical Research Council and the Australian Health Ethics Committee.

Currently, they are not at the table when experimentation and research on them is discussed.

Yours faithfully,
Dr. James Allen

Bachelor of Medicine, Bachelor of Surgery, Bachelor of Laws
Fellow, Australasian College of Legal Medicine
Associate Fellow, Australasian College of Health Service Management
Fellow, Royal Australian College of General Practitioners

For the latest lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ) news in Australia, visit qnews.com.au. Check out our latest magazines or find us on Facebook, Twitter, Instagram and YouTube.

Andrew M Potts

Andrew has been covering LGBTQIA+ issues for a range of publications in Australia over two decades and was the Asia-Pacific correspondent for global LGBTQIA+ news website Gay Star News.

QNews, Brisbane Gay, App, Gay App, LGBTI, LGBTI News, Gay Australia

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