Including sexual orientation and gender identity in federal health data

via Danah Boyd, it seems the government is not taking gender identity or sexual orientation into account when it collects health data. Bill Jesdale writes,

But there is no nationally representative dataset that yet captures sexual orientation data, making it very difficult to do the kind of research I am most intereted in – looking at the impact of normative heterosexuality on health. Because most of the studies that do include sexual orientation data happen in States that are relatively friendly (VT, RI, MA, CA, WI, etc.), it is difficult to find a comparison group exposed to higher levels of societal homophobia.

I understand reservations about differentiating between different sexual orientations and gender identities when collecting this data — because research can be manipulated to make generalizations and downplay or ignore people’s individual experiences. (We discussed this in the comments to Courtney’s post on the New York Times Magazine piece on female desire.) But in order to advocate for big-picture solutions to address the ways LGBTQ folks are discriminated against in the health system, it would really help to know how widespread problems are. That’s where data come in — and why I ultimately think it’s a good idea to ask that info like gender identity and sexual orientation be included in data collection.
There’s already some movement in this direction:

Hats off to Senator Sheldon Whitehouse (D-RI) for initiating a “Dear Colleague” letter to ask the Senate to set aside $2M to ask questions about sexual orientation and gender identity on the National Health Interview Survey is a good start.

Now let’s get other senators to sign on. Do you live in California, Connecticut, Delaware, Massachusetts, Maryland, Michigan, Montana, New York, Ohio, Oregon, Pennsylvania, Virginia or Wisconsin? More info on how to contact your senator, after the jump…

Below that is a short script for what to say. The Senate switchboard number is 1-202-224-3121, and though an operator answers 24 hours a day, calls during business hours (when you can speak to an actual Senate staffer) are particularly important. The sign-on deadline is Friday, so time is of the essence!
SENATE TARGETS
Barbara Boxer (CA)
Christopher Dodd (CT)
Ted Kaufman (DE)
John Kerry (MA)
Benjamin Cardin (MD)
Carl Levin (MI)
Debbie Stabenow (MI)
Max Baucus (MT)
Kirsten Gillibrand (NY)
Charles Schumer (NY)
Sherrod Brown (OH)
Jeff Merkley (OR)
Robert Casey (PA)
Mark Warner (VA)
Jim Webb (VA)
Russ Feingold (WI)
WHAT TO DO WHEN YOU CALL:
To contact your Senator, please call the Senate switchboard at (202) 224-3121, tell them your state, and ask to speak to your Senator. When you are connected to your Senator’s office, ask for the staff member who works on Health and Human Services appropriations.
Whether you are talking to a person or a machine, you can be very brief and to the point. Tell them, “I am a constituent who supports appropriating an additional $2 million for the National Health Interview Survey. I want Senator [NAME] to sign on to Senator Whitehouse’s letter and support LGBT data collection. Please call Jordanna Davis in Senator Whitehouse’s office to sign on to his appropriations letter.”

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3 Comments

  1. brightred
    Posted April 30, 2009 at 3:08 pm | Permalink

    I’m pretty unfamiliar with this matter, so I’m confused about what this “health data” is and what it’s used for… Is this data to be collected in order to assess healthcare *providers* (eg, to explore how and to what extent they discriminate against LGBT healthcare recipients) or to make assessments about the health of straight and LGBT *people* based on how they identify their sexual orientation? And if it’s the latter, is this data supposed to assume some kind of obvious relationship between sexual activity and orientation? I feel like a lot of healthcare activists have pointed out that how one identifies sexually is often a really unreliable indicator of what their sexual habits actually are and that studies that make assumptions about behavior based on identification produce really bad data (which can in turn create really wrongheaded policy initiatives)–and I for one would be reluctant to contact a senator to get her/him to press for data collection that does that.
    That’s even aside from my reservations about government’s capacity to collect data on sexual/gender identity in a halfway competent way–the agencies that do already collect sexual behavior info don’t make me very optimistic. For instance, the CDC, as I understand it, puts transgender women in the category MSM, which aside from being politically troubling, systematically obscures the fact that trans women seem to in fact have drastically different (specifically, higher) HIV rates than nontrans men who have sex with men.
    Anyway, if in my ignorance I’m being preemptively skeptical in an unreasonable way, then nevermind! I’m just having visions of ridiculous forms that say things like “SEXUAL ORIENTATION: Gay, Lesbian, Bisexual, Transgender (circle one)” and would hate to have something like that get used ultimately to make policy decisions that presume to know something about what people are doing in bed.

  2. Rebecca
    Posted April 30, 2009 at 5:56 pm | Permalink

    This has also already been incredibly successful on the House side due to the efforts of Representatives Baldwin, Christensen, and Weiner.
    This data is used to set federal priorities for funding and programs. Until LGBT people are counted in a correct way (NOT putting trans women into the MSM category), LGBT organizations can not access these needed funds and federally-funded programs are not accountable to the needs of LGBT people.
    This is another great move from Representative Baldwin! She was amazing on hate crimes yesterday.

  3. JBuz
    Posted May 1, 2009 at 1:11 am | Permalink

    I understand why having a way to collect this data is important, but we must remember that many of us live is states where it is still legal to fire someone based on their sexual orientation and/or gender identity. To me, the possibility of this list leaking to the wrong people and being used in a discriminative way is a scary thing.

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