Sunday, April 10, 2011

How Come Queer Health Research Can Only See Unhealthy Queers?

Recently, the prestigious Institute of Medicine came out with a tremendous compendium, The Health of Lesbian, Gay, Bisexual, and Transgender (LGBT) People: Building a Foundation for Better Understanding.
The goal of the book was to describe the state of knowledge on queer health, identify priorities for future health research, and make specific recommendations to the US National Institutes of Health.
And as far is goes, it does these tasks very well. The literature review is very thorough and will be useful for anyone writing a grant, among other things. The chapter on context is a great 30 minute romp through our nation's homophobic history.
The recommendations it makes are, in my opinion, a mixed bag, from laudable goals to some that I really can't get behind at all. All are the inevitable result of the mainstreaming of queer health research and bringing it into the NIH funding model.

If you've followed this blog in the past, you probably can guess that I don't think it goes far enough. I have to admit that I have not yet been able to read each and every sentence in the thing. It's huge. But I have read the executive summary, the intro and the recommendations, and I doubt that there is anything buried in the rest of the document that would alter my critique. (I hope I'm wrong, and look forward to being pleasantly surprised).
I also have to say that lots of this report makes for wonderful reading. If I had more time to devote to this, I would balance a lot of this criticism with things that the report does really well, like acknowledge that homophobia hurts straight people too.
I'm going to break my critique down into two sections. The first will address two broad deficiencies of the report: a failure to fully appreciate the health similarities and even advantages of TBLG people. What do we do well, for ourselves, one another, and for the society at large. A failure to understand the role of social context in the lives of queer populations except in a very limited and limiting way. Second, I'm going to tackle the recommendations one at a time..

Where's the Health?
Given that the report draws on the most frequently published research, it should have come as no surprise that the report concentrates heavily on health disparities in a very particular (and peculiar) sense. In virtually every case, "health disparities" means a health outcome (like depression, asthma, etc.) that we do worse on than heterosexuals. Very little attention is paid to those areas where we do about the same, and none (that I've found yet) of the things that we do better on than straights.
For example, gay men tend to have lower body mass index than straight men, but you won't find that anywhere in this document. Instead you'll find that lesbians are more likely to be heavy than heterosexual women repeated in at least three places, and a complete silence on the health advantage of gay men in this area.

Why focus only on adverse health disparities? As near as I can figure it, the rationale for focusing exclusively on adverse health disparities is that these fit nicely into the narrative that homophobia is bad, and homophobia affects TBLG people by making them less healthy in a variety of ways. Fair enough, but if homophobia is the thing making many of us sick, why not measure homophobia directly?

What's the danger of focusing exclusively on adverse health disparities?
1) It's not an accurate portrayal.
2) It's demoralizing - it reinforces the very effects of homophobia by making 'health' seem unattainable for queers.
3) It makes the radical religious nuts in this country smile from ear to ear - they love pulling out data about how unhealthy we are when they try to deny us various civil liberties (if not our existence entirely).
4) It doesn't explicitly differentiate whether these disparities are due to homophobia (as we would like to think), or whether they are due to some inherent, inborn insufficiency (as the nuts would like to think). Both interpretations are supported by these data.
5) We can't learn anything from the health advantages that we can build upon and use to improve the health of our communities if we can't call 'em when we seem 'em.
6) We can't really offer anything useful to other populations (heterosexuals, as well as other minority groups) as success strategies, if all we identify and talk about are what's adversely affecting us.
7) We can't learn how homophobia affects heterosexuals with this approach.

By analogy, the first century or so of research into health disparities affecting racial and ethnic minorities has largely fallen into the same trap, of spinning out a relentlessly monotonous string of adverse health disparities. These health disparities get interpreted by most of us as evidence that racism affects health adversely, and by bigots as evidence that they were right all along. Health disparities allow both interpretations.
A nearly exclusive focus on adverse health disparities has prevented us from seeing what it is that racial and ethnic minorities do well, what lessons can be learned to promote the health within these communities, and what lessons can be exported to the wider population as well?
For decades, epidemiologists have pondered and shrugged off the "Hispanic paradox", which is that many of the adverse health disparities one sees when comparing Blacks to Whites are not there when comparing Hispanics to Whites. And in many cases, (such as birth weight and longevity), Hispanics' health generally exceeds that of Whites in this country. Not looking into health similarities and advantages has really stalled both understanding the true nature of racism and how it operates in the US (it's a lot more complicated than 'being a minority'), and also being able to build on the record of strength that various communities have already demonstrated despite or perhaps because of living in a racially hostile social climate.

So, when this report focuses so exclusively on adverse health disparities, it really does us all a disservice. It's not an accurate picture of our health. It is demoralizing and depressing to read that litany. It supports our most adamant opponents' views of us. It doesn't get to the root cause. It doesn't show us what we've done well for ourselves, each other, or the communities (geographic, not identity-based) that we live in. It doesn't point (efficiently) to solutions. It doesn't address the degree to which cis-gender heterosexuals are affected by the same forces.

Social Context Involuted
I had the great honor to listen to a panel discuss the report at the 10th anniversary celebration for the Williams Institute on Friday. Stephen Russell was one of the panelists, and he really brought home the message that the report had been insufficiently curious about the role of social context in the document. I was practically giddy with excitement as he spoke, because I no longer felt like the lone curmudgeon in the room. Not that Stephen was a curmudgeon, not at all, I just was beginning to feel out of place as speaker after speaker lauded the report rather uncritically.

What do I mean by "insufficiently curious about the role of social context"? Well, I mean that the report does talk about the importance of social context, and much more so than the other documents of this type. One of the "cross-cutting perspectives" that the report recommends be used to understand TBLG health issues is:

A social ecological perspective--An individual's health is affected by community and social circumstances. LGBT health research should consider both the individual and the various contexts, including interpersonal relationships, in which the individual lives. (Summary, page S-6)

Not only that, they devote an entire chapter to describing the historical and social context of homophobia in these United States that is well worth reading.
Not only that, but also they have a terrific discussion of how stigma operates at various levels.

But, notice what happens in that definition of a social ecological perspective above - the definition sounds very inclusive of understanding how homophobia operates in the social environment, but the single specific context they mention is a highly individualized one "interpersonal relationships". Likewise, there are several points in the article which confuse "structural" with "institutional" or even "interpersonal" levels, where the interactions between patient and provider are characterized as "structural".

And when they get to the recommendations, this trick of collapsing social context down to the most proximal surroundings of a person happens every time the concept is mentioned. And nowhere in the recommendations is it suggested that a goal for understanding LGBT health should be to develop or use measures of heteronormativity and/or homophobia at any level beyond how it affects individuals in these very limited, proximal contexts.

I decided to do a bit of a quantitative analysis of this bias in the document (sorry my qual friends, I just don't know how to do your style well). I searched for the terms "stigma", "discrimination", "prejudice", "homophobia", "heterosexism", "heteronormativity", "homonegativity", and slight variations on these words.
The terms "stigma" (and "stigmatizing", etc.), "discrimintation" (and "discriminatory", etc.), and "prejudice" (and "prejudicial",etc.) occurred fairly often, including in the recommendations section. "Homophobia" and its kin occurred considerably less often, most often in the chapter on context, and the literature review, when other authors were being cited. It was completely absent from the recommendations, as were the other terms in my search list. About half of the occurrences of the term "homophobia" were in the titles of papers cited in the reference section.
OK, so they focused on "stigma" and "discrimination" in the parts of the document where they were proactively describing what they thought should be done in the future.
But every time these terms were mentioned in these sections, it was as though stigma and discrimination just happen to people, that there is no identified source. We should of course be measuring the experiences of discrimination and stigma that affect our health, but shouldn't we also try to identify those who do the discriminating? Those who perpetuate the stigmas?

Otherwise we run the risk of repeating what has been done in the "perceptions of racial discrimination" literature, where the source of that discrimination is rarely named (except in general terms like "at work" or "in health care"), and the use of the term "perceptions" invites the interpretation that this is somehow all in people's heads, that they are perceiving discriminatory acts whether or not they were intended to be discriminatory, and rarely delves into the pervasive issue of discriminatory actions that are not perceived as such (doesn't everyone get watched in those big mirrors when you're shopping?).

The Recommendations
The report has seven recommendations. Here's my take on them (wow that sounds egotistical. But it is egotistical, so I might was well own it instead of pretending that I represent a broad swath of TBLG opinion on these issues).
In general, these recommendations are written on behalf of people researching TBLG health, who are invested in the model of getting funding from the government to do so, written to the government agency that they seek to influence (and which itself seeks to be influenced).
As a result, they tend to look out for the interests of the researchers, even when these interests may conflict with those of many individuals in TBLG communities (although they are generally in concert), and they are intended to be appealing to a government funding agency that is notoriously shy about engaging in politically-charged areas.

The first recommendation is that "NIH should implement a research agenda designed to advance knowledge and understanding of LGBT health", which sounds pretty innocuous. What else should a group of researchers appealing to a government agency for more funding start out with. And who could object to more research?
I guess for me it comes down to what research are we getting more of? Demoralizing work on adverse health disparities (of which I would classify almost all the items listed in their specific recommendations in table 7-1, aside from the demographic items), or a richer exploration of health similarities and health advantages as well? Research that is highly individualized, dominated by the well-established methods of mass survey techniques, or research that starts with what we want to learn, then develops the methods most suitable to achieving those goals.
This part of my critique applies to the vast bulk of health research funded by the NIH, and isn't specific to TBLG health research at all.
More research, sure... but how about the right research?
There are lots of sub-recommendations under this one which I can't get into right now. Some of these have the potential to be great ("social influences on the lives of LGBT people"), and some leave me cold ("inequities in health care"), but that's for another day.

The second recommendation is that "Data on sexual orientation and gender identity should be
collected in federally funded surveys administered by the Department of

Health and Human Services and in other relevant federally funded surveys". More data = good... mostly. This one gets my unqualified support. The more surveys ask about us, the more we will be fairly represented. With sexual orientation, this is pretty easy, because the questions are there. Gender identity is a bit more difficult, because very little is known about how questions about gender identity perform in general population surveys. There are some dangers here, though. It is likely that the first few surveys that ask about gender identity will "get it wrong", but not in the way you're thinking - the biggest problem will be that a small number of people who have never given their gender a conscious second thought will answer the question incorrectly and be counted as transgender. As a result, a substantial proportion of the transgender-identified population will actually be inattentive or confused cis-gender folks, maybe even half or more.
But, as Gary Gates told me, if you don't have any questions on there, there won't be the incentive to fix them and make them more accurate.

The third recommendation "Data on sexual orientation and gender identity should be
collected in electronic health records
" seems ill-advised to me. The research potential of asking these questions is phenomenal, but I'm not at all convinced that there are sufficient protections around this (or any) medical information to make it a standard field. And even when the information is protected sufficiently, there are many circumstances where being "out" on one's medical forms can be downright dangerous. I understand the potential for benefits in terms of getting more appropriate care, but that assumes that appropriate care is available, and that we even have a good sense of what appropriate care would consist of. I'm not convinced that we do know what TBLG appropriate care means in a broad enough set of circumstances to warrant having this information collected routinely on medical records. Should people who feel that it is important to their care have it recorded in their charts? Of course! But do we really want a young trans lesbian in Colorado Springs having that information on her record when she walks into see a provider she's never been to before?

The fourth recommendation is to "NIH should support the development and
standardization of sexual orientation and gender identity measures
". Yes, of course. But at the same time, there is a risk that these standardized questions (much like the OMB directed race/ethnicity questions) will result in less curiosity about how people self-identify, and re-inforce the "normality" and reality of a small set of mutually exclusive categories. I still think it's a good recommendation. I just worry about cookie-cutter inclusion of the question in an un-thinking manner all over the place.

The fifth recommendation, that "NIH should support methodological research that
relates to LGBT health
" is one I am fond of, but I think that is because I am really into methodology and want to see a certain set of methods (especially ecologic methods) built up, although most of it will probably be devoted to trying to turn various forms of "convenience" sampling into "probability" sampling. Boh-ring!

The sixth recommendation, "A comprehensive research training approach should be
created to strengthen LGBT health research at NIH
" Sure, why not.

The seventh recommendation scares the pants off me. "NIH should encourage grant applicants to address explicitly the inclusion or exclusion of sexual and gender minorities in their samples". Sure there are abuses where TBLG people are inadvertently (and in some cases very intentionally) excluded from various research projects. But the discrimination we face in this regard is tiny compared to the historical discrimination against women and racial/ethnic minorities in particular in clinical trials. And a similar remedy for this past exclusion has had limited success and some strange side-effects (see Stephen Epstein's book Inclusion: The Politics of DIfference in Medical Research).
This formulation makes it sound like participating in health research is a civil right, and while exclusion from trials without a good basis should be discouraged, I'm not sure that adding another administrative check-box on the NIH grant forms will really achieve that goal, it may raise false hopes of being able to study TBLG folks in the vast majority of health studies. Perhaps most worrisome, by drawing attention to sexual orientation and gender identity as categories across which one should compare results, we are on the verge of being flooded with falsely positive chance findings that will crop up in various studies and which may or may not be able to be shoved back into the bottle with future research (as examples of this, I would cite the "gay gene" and "gay brain" studies, which, no matter how many times they have been subsequently disproven, still hang in the public imagination as valid). Another example of this (I can't remember if Epstein gets into it or if it came up after his book was published) was the spurious finding that an HIV vaccine candidate appeared not to work over-all, but did appear to work in a bizarre atheoretical grouping of African-American and Asian-American men. That finding was widely reported on, despite obviously being irrelevant to how the vaccine worked. It was a statistical fluke. And how often should we expect a statistical fluke? About 1 in 20 times. So if we start encouraging people to look at every possible health-related thing in every study, one in twenty statistical flukes is going to start adding up into an avalanche pretty darn quick.
In my opinion, if recommendation 7 is implemented, then a lot of researchers who have never given a second thought to TBLG issues are going to feel not only empowered to do these analyses, but encouraged to do them, and we're going to be up to our eyeballs in damage-control mode beating back spurious research results.


  1. You know, as I re-read this, I think a lot of my bitterness comes from the fact that MY work wasn't cited in the report. I still have a hard time figuring out why the finding that gay rights laws seem to reduce teen suicides hasn't caught on to a greater extent.
    On the plus side, they do cite Laura Szlacha's work about kids in schools with GSAs vs. schools without GSAs, so I'm happy to see that there's a little bit of "contextual" analysis that goes beyond the individual and their family.

  2. This is great, Bill. Don't underrate your skills as a qualitative researcher, either. You're clearly thinking about how language choices construct 'the problem' socially. Re stigma, it really is an independent social process, but I liked Peter Keogh's point, at the GMHS in 2009, that it might be an artefact of our way of thinking socially, rather than a separate process we can work to diminish.

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