Aunt Dana Wants You! (To partner with researchers, and so will they)

You have probably seen the billboard from World War II with a picture of Uncle Sam, dressed in red, white and blue, pointing a finger at the viewer, saying “I Want You to Join the Army.” Well there is a new war on.  A war for minds and hearts of Western culture to gain acceptance for transgender people and you can and should enlist. The number of visible transgender people is rapidly increasing and transgender science studies are being mobilized to understand and determine how to treat transgender people health wise.

It is a Federal law that researchers, including researchers using transgender people as subjects must get approval from a thing called an Institutional Review Board (IRB).  Many universities have IRBs which consist of both researchers and community ethics representatives. They approve research plans and monitor their execution.   The IRB law was in reaction to research abuses in the last century such as the Tuskegee experiment. The Tuskegee experiment pretended to provide treatment for syphilis to a group African American people but was really looking at the progression of untreated disease. So, legislation was passed to rein in the government (in the case of Tuskegee it was the U.S. Public Health Service) and others from committing such heinous acts.

To deal with the increase interest in transgender science research, guidelines have been developed for IRBs to approve research proposals and monitor research conduct with regard to being transgender.  And these guidelines require real partnering by researchers with transgender people and groups. THEY REQUIRE YOU!  This is real partnering, not using transgender people as subjects, only to ignore them or pathologize them after the studies are completed. And WPATH is attempting to put real teeth into these guidelines by requiring cooperation with transgender people and groups before they will consider publishing an article in their journal, The International Journal of Transgenderism (they are considering a name change to get rid of the” ism” part).

The guidelines are as follows:

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.

(Adams, et al., 2017)

I will provide some comments on these guidelines:

1. Researchers may have medical or Masters or PhD degrees but are only now catching up with real transgender people and their needs, subculture and language. Some may be sympathetic, but have never received education and training on how to deal with transgender people.  Not in medical school, not in nursing school, not in psychologist school.   Over half of you have said that you had to provide information to clinical providers about being transgender. (Grant, et al., 2011).  And some providers have been known to overreact to transgender people, witness the transgender “broken arm syndrome” which results when providers start attributing every ailment of a transgender person to their transgender status.  Sometimes a broken arm is just that, not having a deeper meaning that transfers to other things.

2. I have got to  tell you that I will enjoy reading transgender science studies a lot more if they are non-stigmatizing and do not use pathological terms and references. Over the years, I have learned to wade through pathological language that researchers believe that they need to use to communicate. But even my patience wears thin, at times.  When it does, I fall back on my training from my favorite professor, Lawry Gulick, who taught me to just concentrate on the procedure and result and make up my own d**n mind about conclusions. Mostly their intentions are good, they just only know how to frame a study or use the right language.  Another thing is that the right language is a moving target. Looking back on my books and blogposts, I cringe when I read about transexualism and transgenderism which are no longer acceptable or meaningful terms to the community like they were in 2005 or even 2010. 

3. IRBs require that research subjects receive debriefs and information on the results of studies. I have participated in a lot of research studies and I have never heard back from a single researcher, even after invoking professional courtesy and requesting a copy of their report. I often have found  results in searching the literature on transgender science and say to myself, “didn’t I participate in that one?”  But if researchers have to report back to the next IRB on their dissemination-to-subject performance, this communication may improve.

4. The transgender umbrella now contains great diversity. To me, it is okay to study a well-defined fraction of it, as long as it is explicitly stated.

5. Informed consent means that the investigators let you know completely what you are getting yourself into, including any risks. They also should state that individual results will only be used anonymously or in the aggregate. Check the “EULA” next time you participate, they sometimes leave this out. 

6. The protection of participant confidentiality must be assured. Although, data on identification of participants needs to be retained, it also has to be protected. Although most of my research was with testing imaging sensors and computer system designs, I always coded information that might lead back to participant identification. The aerospace engineers never understood why I was doing this, but I felt it was a professional obligation. And, after a decent time, (10 years or so) I destroyed any personal information. Participants need to know what is to become of any confidential data they help produce.

7. Informed consent for minor children is a tricky issue. Parental permission is legal and it helps but, if possible, every effort must be made for kids to understand about what is going on and agree to the extent that they can. 

8.  This guideline is in reaction to reparative or conversion therapy attempts to change congruent gender. It appears from the sexual orientation change efforts literature that change efforts are ineffective and sometimes, dangerous. I know that change efforts have been tried to change congruent gender in transgender people but documentation is scarce.   Such change efforts are usually directed at children which makes informed consent problematical as in 7. By the way, the correct terms now from the APA are gender and sexual orientation change efforts which is great because I no longer have to refer to reparative and conversion therapy when there is, in fact,  no therapeutic value in such activities.

9. IRBs should not be in the business of censoring research studies, they are  strictly there to protect  participants. Even though a proposed study may involve sex, gender, parental relations or other sensitive issues, it is not their business to censor or slow-roll their approval.  Actually, many of the most sensitive studies carry the most meaning and utility because they get to the core of things.

Now you probably are thinking about why you or your organization should not partner with researchers and I will deal with some of these potential thoughts. You may be thinking that historically transgender people and organizations have not partnered on research studies but you would be wrong.  Virginia Prince, one of the founders of Tri-Ess, probably the first support group, published several articles in partnership with researchers. In one of them, she surveyed over 1000 transpeople. Another example was that Lynn Conway in the early 2000s did not believe the quoted population frequencies of being transgender, so she did her own engineering estimation studies. Survey results are beginning to catch up and confirm her results.

And you may not realize that many current researchers are actually themselves transgender. Transgender people have come out in some of the highest research positions in medicine, surgery, nursing and mental health and there are probably more to come.

This year, I hope to establish research partnerships between transgender communities and researchers. For example, I am in discussions with Tri-Ess on getting research started to meet their needs as being representative of other transgender people. Their main need, so far,  seems to be to research and improve marital therapy to keep marriages intact for couples in which one is trans. (Note: They insist that they are not transgender people, rather crossdressers and that is their prerogative).

You may be thinking that you do not know any researchers. Suggest you look at the online rosters of WPATH or American Psychological Association Division 44 for the nearest member who treats transgender people or does research on being transgender. You can also identify researchers through university websites. Universities are always glad to publicize their research, particularly now that transgender science is hot. But the usual cautions are in order to ask around in the transgender community before you start emailing researchers. Suggest you also go online and read some of their publications.

Given the new IRB guidelines, however, it is likely that researchers will come looking for you or your organizations. Do not panic, you now understand why they will be contacting you. They NEED you.

A final objection to dispel is that research and facts do not matter in the war for minds and hearts towards transgender acceptance. You are wrong about that, too.  There are those who are total science deniers, and we cannot easily reach them. But then, there are also the partial deniers. One may not believe in global climate change but that is not the same as total rejection of science. The results of scientific studies will change because science learns from its mistakes and is recursive. Point here is that we will not hone in on reality unless we conduct science. Facts ultimately matter.

For those have experienced “gaslighting” that imposed shame on you for being transgender, cast out your fear of research. I for one, have to know what being transgender is all about and how to deal with it. Research is going to happen. And if you do not get involved in research to keep it on track, you have only yourselves to blame. 

There are those who can be convinced by scientific evidence. They include many providers, whether or not they conduct transgender procedures.  They are seen by their patients and community members as being experts, so they have some impact. Then there is you. If you are reading this blogpost, then you believe in the scientific process or you would not be here. In the long run, what you believe is most important because it gives you validation and courage to be transgender.

References

Adams, N., Pearce, R.,  Veale, J., Radix, A., Castro,  D., Sarkar,  A., & Thom, K.C. (2017).

Guidance and Ethical Considerations for Undertaking Transgender Health Research and Institutional Review Boards Adjudicating this Research. Transgender Health, 2, 1, 165-175.

https://www.liebertpub.com/doi/pdfplus/10.1089/trgh.2017.0012

Grant, J.M., Mottet, L.A., Tanis, J., Harrison, J., Herman J.L. and Keisling, M. (2011). Injustice at every turn: a report of the national transgender discrimination survey. National Center for Transgender Equality and National Gay and Lesbian Task Force.

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Tags: featured, gender research, Transgender

Category: Transgender Body & Soul