Saturday, July 02, 2011

A critical opportunity in transgender research

By Angus "Andrea" Grieve-Smith

The Department of Health and Human Services has just made a big announcement: they will begin collecting data on LGBT issues, including transgender issues. The goal is to document disparities in health care, as well as plain old disparities in health, so that they can be addressed in the future. The plan is to have two roundtables on "gender identity data collection" with "key experts" this summer and fall, and then the "Data Council" will present a strategy next spring. The department will also collect public comment in various ways, one being through a website called regulations.gov, which is currently down.

If done right, this could be a tremendous help to understanding transgender issues. "The first step is to make sure we are asking the right questions," HHS Secretary Kathleen Sebelius told the Washington Post. "Sound data collection takes careful planning to ensure that accurate and actionable data is being recorded." As I've written before, current research on transgender feelings and actions is severely hampered by the lack of any kind of representative sample. Just to give you a quick sense, here are ten very basic questions that nobody knows the answer to:


  • How many transgender people are there?

  • How common are the various transgender thoughts, feelings and beliefs?

  • How common are transgender actions like cross-dressing, body modifications, and "soft mods" like shaving?

  • How common are transgender name and pronoun changes?

  • How common are part-time cross-living and full time transition?

  • How often are sexual activities part of transgender activities?

  • How common are diseases and destructive habits among transgender populations?

  • How many transgender people are in long-term relationships?

  • How often are various subgroups targeted by violence and discrimination?

  • How satisfied are transsexuals twenty, thirty or forty years post-transition?


Unfortunately, transgender research is dominated by two camps, the pathologists who make unfounded generalizations based on case studies of their own patients, and the social service providers who make unfounded generalizations based on service recipients, Internet surveys and word of mouth. Neither of them seem to have understood the idea that while convenience samples can provide the basis for many useful existential statements, prevalence statements based on unrepresentative samples are worthless.

At this point it looks like the roundtables will be heavily influenced by social service providers who only pay lip service to the limitations of their research. The Plan says, "While HHS is in the beginning stages of developing data collection on gender identity, many researchers (e.g., Williams Institute at the University of California Los Angeles and the Center for Population Research in LGBT Health at the Fenway Institute) have been working on such data collection for several years." The Williams Institute produces reports like "Bias in the Workplace" (PDF), an important summary of numerous studies investigating workplace discrimination that repeatedly acknowledges that the studies are based on convenience samples - and then goes ahead and repeats percentage results as though they meant something.

The Fenway Institute employs transgender health advocate Emilia Dunham as a Program Associate, and she also hosted a webinar on the issue. It seems quite likely that she will be one of the experts at the roundtables. But in an otherwise solid article for Bay Windows presenting these changes at Health and Human Services, Dunham uncritically repeated several of these unsupported percentages.

There is a very short list of Experts who I think should be on these Roundtables. The strongest research into transgender issues has been qualitative research: listening, reading and introspection, finding existential statements but not making unsupported claims of prevalence. I've said before that the best qualitative researcher in the transgender community is Helen Boyd, author of My Husband Betty and host of this Group Blog. At Helen's recommendation I've also read a few things by Raven Kaldera that have been pretty good, particularly his post on female transvestites (which has somehow disappeared from his website).

There is only one person out there who has ever collected data from a representative sample of any transgender community, and that's Niklas Långström of the Karolinska Institutet in Sweden. He's not focused on the transgender community, and he's associated with the pathologist Kenneth Zucker (who is not someone we want involved), but he does know how to do a national survey, and it would be worth every penny for HHS to fly him over from Stockholm for the Roundtables.

If they can't get Långström, then I want to be on that Roundtable. I don't have a degree in psychology or public health, but I did take an elementary course in statistics, and I learned what you have to do in order to make a generalization. But what matters more than any qualification is that I care about doing this right. If they can't find anyone else who does, I want to be there.

Am I missing anyone? Are you doing quality quantitative research? Please let me know.

7 comments:

Miz Know-It-All said...

You can bet your bottom dollar that the one thing which will most certainly be left out, as it is always left out Is contained in the very last of the ten questions.

How many transsexual are there and how many (most one would assume) are happy and healthy post operative!

Transsexual VS Transgender... This whole transgender thing is cobbled onto the back of transsexual and it is done for the express reason that the transgender want people to think of transsexual when they say transgender when the reality is anything but and that most of the transgender are CD's, who like Helen's Hubby who took things and ran with it rather than those born this way who must transition or die! He had a choice and she supported him we didn't! But we will still be tagged in this as transgender and our needs will be subsumed once again to the "greater needs" of the transgender...

Want to make this real? Put someone like Janet Mock on the panel! Let our voices be heard for a change!

grvsmth said...

That doesn't fit with what I see. It may be that most transgender people are "CDs," but that doesn't mean we dominate the "community." Why are the vast majority of transgender-related stories in the media about transition? Why are so many of "transgender community services" about transition and body mod issues? What are these non-transsexual needs that are being served? I don't see them.

Walker said...

I would hope that transgender research would respectfully gather good,data on all of us in all our variety. And, as a transsexual man, I am frustrated and saddened when I see a hostile or hurtful comments from someone within the trans community toward another, "different" part. Other transfolks, MTF, FTM, Transgender, Transsexual, etc, should be allies in trying to make things better and in supporting one another where we can. I dont get the point of attacking one another.

Zachary said...

These steps forward are important and exciting! I am a trans researcher and anthropologist and recently completed a study of stress and health during transition among transmen. The study involved both qualitative (extensive interviews) and quantitative (multiple biological measures of stress and health) methods. It is a cross-sectional study (N=65) and I agree that not knowing what a representative sample looks like in our population is a huge problem.Looking forward to being involved in research during a time when it is so desperately needed. Happy to have been directed to this blog!

Emilia Dunham said...

As the author of the Bay Windows article I have a few concerns with this blog entry about my piece and my work.

For one, this was technically an opinion piece in an LGBT newspaper not a scholarly article. Furthermore, I still cited the source I used, which was the National Center for Transgender Equality's national survey on trans discrimination, report titled: Injustice at every turn which can be found: http://endtransdiscrimination.org/PDFs/NTDS_Report.pdf and my article reposted with links is here http://lgbthealthequity.wordpress.com/2011/07/01/bay-windows-feature-emilia/. These statistics were gathered from that report so I am confused when you say I am generalizing. I agree with much of what you say, for instance that some research and especially media stories on trans people can be grossly stereotypical and unsubstantiated. However, all of my points you highlight are backed up by that report aside from the first one you list about hormones and surgeries. The study doesn't look at these factors compared with the general population, but they do have numbers on how many respondants are taking hormones and have had surgeries.

Although I welcome discussion on this, and hope more folks engage in trans health, I don't appreciate the public and incorrect criticism of me. There is so much going on in trans health policy which was what I was discussing in the article, but I hope we can focus conversation on making real change.

Emilia

Emilia Dunham said...

As the author of the Bay Windows article I have a few concerns with this blog entry about my piece and my work.

For one, this was technically an opinion piece in an LGBT newspaper not a scholarly article. Furthermore, I still cited the source I used, which was the National Center for Transgender Equality's national survey on trans discrimination, report titled: Injustice at every turn which can be found: http://endtransdiscrimination.org/PDFs/NTDS_Report.pdf and my article reposted with links is here http://lgbthealthequity.wordpress.com/2011/07/01/bay-windows-feature-emilia/. These statistics were gathered from that report so I am confused when you say I am generalizing. I agree with much of what you say, for instance that some research and especially media stories on trans people can be grossly stereotypical and unsubstantiated. However, all of my points you highlight are backed up by that report aside from the first one you list about hormones and surgeries. The study doesn't look at these factors compared with the general population, but they do have numbers on how many respondants are taking hormones and have had surgeries.

Although I welcome discussion on this, and hope more folks engage in trans health, I don't appreciate the public and incorrect criticism of me. There is so much going on in trans health policy which was what I was discussing in the article, but I hope we can focus conversation on making real change.

Emilia

grvsmth said...

Oh Emilia! Everyone gets criticized in public; that's what happens when you blog. I tried to do it as nicely and constructively as possible, and to make it clear that I wasn't criticizing you as a person, or the rest of your work.

This criticism is completely correct. On page 13 of the study you cite, the authors write, "While we did our best to make the sample as representative as possible of transgender and gender non-conforming people in the U.S., it is not appropriate to generalize the findings in this study to all transgender and gender non-conforming people because it not a random sample." But that's just what you did.

I'm sorry to have to single you out, because you're just doing what everyone around you does. The fact is that almost everyone in trans health research produces unsupported generalizations at an alarming rate. In fact, the authors of the study violate their own warning, and every other page of that PDF is filled with unsupported generalizations.

I could have chosen from dozens of articles and blog posts about transgender research to illustrate my point. I chose your piece because it was handy. Please don't take it personally.