ethics

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Cass Review GRA study an appalling breach of research ethics

Logo of the Cass Review

I was dismayed to read that the UK Government are amending the Gender Recognition Act. Specifically, they are removing the offence under section 22(1) of the Gender Recognition Act 2004 for the disclosure of protected information, to enable this disclosure where it is “necessary for the purposes of facilitating, assisting or undertaking relevant research”.

This amendment enables NHS England to obtain trans people’s confidential information about their medical treatment for the purpose of research into child and adolescent gender services by the Cass Review. Specifically, it enables the acquisition of information (a) that could contain personal identifying details, (b) without that person’s consent, and (c) for individuals who obtained specific legal protections with the reasonable belief that these would remain in place. There has been no community consultation ahead of this move.

As a social researcher and expert in ethical methodologies, I believe that any research undertaken under these circumstances would represent an enormous breach of the basic principles of research ethics. Moreover, it will could significantly undermine the already extremely low existing low level of trust between trans community members, researchers, and medical practitioners.

Finally, the amendment also represents a significant weakening of the Gender Recognition Act’s legal protections for trans people (although for a full and measured analysis, see this post by What The Trans).

I have therefore written to the NHS England’s Gender Identity Programme Board to express my concerns about this development. I also hope that any university or NHS ethical panel overseeing the approval of such research will prevent it from taking place.

You can read some of my published work on ethical research with trans populations here.

You can write to the Cass Review to express your concerns here.

Posted updated 2 July to include new details.

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Clinical research with trans patients: a critique

WPATH_BuenoAr_Logo_reverseIn November I participated in a panel on research ethics at the 2018 WPATH Symposium in Buenos Aires, “Ethical Considerations in Transgender Health Research Practice”.

I presented a talk based on work I have undertaken with Dr Michael Toze (who sadly could not join us at the conference). Entitled Trans Health Research at a Gender Identity Clinic, the talk critiqued clinical research methods employed at a UK gender clinic, using the example of published research on video gaming.

I argued that clinical researchers should be mindful of the power dynamic that exists between them and their patient/participants. I also presented evidence that methodological and ethical issues have resulted in harm to participants, and undermined the validity of empirical claims.

This talk was kindly recorded by Ellen Murray, and you can listen to it below.

 

I have also uploaded produced a transcript of the talk:

Trans Health Research at a Gender Identity Clinic

And you can download the slides here.

Please do feel free to download and share this talk with anyone you think might find it interesting or useful, as long as myself and Dr Toze are credited.

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The talk followed a remote presentation by Ali Harris, and preceded a talk by Noah Adams, who discussed the paper we wrote in collaboration with Jaimie Veale, Asa Radix, Danielle Castro, Amrita Sarkar and Kai Cheng Thom: Guidance and Ethical Considerations for Undertaking Transgender Health Research and Institutional Review Boards Adjudicating this Research.

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Ethical guidance on studying trans health, for researchers and ethics boards

I recently co-authored an article on research ethics for the journal Transgender Health. It’s based on an extensive review of literature on the topic, and written by an international team of scholars and health practitioners with extensive experience of conducting research in this field.

Transgender Health is an open access journal, so the article is freely available for anyone to read and share.

I’ve copied the abstract out below: please click on the title for full access.


Guidance and Ethical Considerations for Undertaking Transgender Health Research and Institutional Review Boards Adjudicating this Research

The purpose of this review is to create a set of provisional criteria for Institutional Review Boards (IRBs) to refer to when assessing the ethical orientation of transgender health research proposals. We began by searching for literature on this topic using databases and the reference lists of key articles, resulting in a preliminary set of criteria. We then collaborated to develop the following nine guidelines:

(1) Whenever possible, research should be grounded, from inception to dissemination, in a meaningful collaboration with community stakeholders;

(2) language and framing of transgender health research should be non-stigmatizing;

(3) research should be disseminated back to the community;

(4) the diversity of the transgender and gender diverse (TGGD) community should be accurately reflected and sensitively reflected;

(5) informed consent must be meaningful, without coercion or undue influence;

(6) the protection of participant confidentiality should be paramount;

(7) alternative consent procedures should be considered for TGGD minors;

(8) research should align with current professional standards that refute conversion, reorientation, or reparative therapy; and

(9) IRBs should guard against the temptation to avoid, limit, or delay research on this subject.