Wednesday, April 7, 2010

Studying LesBians: Being ignored or even excluded in non targeted research

Studying LesBians is a monthly column that discusses current and not so current research about lesbians and bisexual women. This month I want to talk about how lesbians are ignored in general research.

When I was an undergrad, I used to participate in many research studies to make some extra cash.

These were mainly from the psychology department and apart from the weird experiment now and then, it mainly involved filling in questionnaires on all kinds of different topics. These studies were usually aimed at the average student, so questions were rather general. Unfortunately, general often meant not taking into account the different backgrounds of participants.

Whenever the topic was sex and/or relationships, the questions always seemed to be phrased in a heterosexual way. I was made to answer questions like: "What do you look for in a man?" or "When was the last time you had intercourse?"

I always tried to answer the best I could, trying to read it from a lesbian perspective, but sometimes it was just impossible to complete the study.

However, most of the time it wasn't even straight relationships (or something like that) they were researching, and a simple rewording of the items, for example, making them gender neutral (e.g., What do you look for in a partner?), would make it easier for everyone to answer.

Nowadays you sometimes see that in questionnaires, they put into brackets something like if you are homosexual read male where it says female or boyfriend where it says girlfriend.

I think considerations like these should be made with any type of relationship or sex questionnaire aimed at a broad public. Still, it's better to not have the questions especially tailored to your sexual orientation, than to not be allowed to participate in research studies at all.

A few weeks ago a study was published in The New England Journal of Medicine, that showed many clinical trials in the United States exclude participants based on sexual orientation.

They looked into over 80,000 clinical trails and they found that as many as 15% disqualified participants based on sexual orientation. This mainly seemed to be the case with trails involving sexual problems or relationships. But also some studies like a drug against ADHD, recovery from certain types of cancer and managing diabetes.

In most cases, there was no need to look only at straight people, and it's really just a matter of discrimination.

According to one of the researchers Dr. Ronald Dunbrack, "It's an exclusion that in many cases, maybe in most cases, doesn't need to be used."

The article goes on to say that for some clinical trials not just gay and lesbians, but also single straight men and women were excluded, without any good reason.

It's alarming, especially when you think that many of these clinical trials can help people with all kinds of medical and psychological problems. To exclude part of the population for no good reason just isn't right.

What's even worse, is that you usually need a good rationale for excluding certain parts of the population from your clinical trails. However, no such rules seem to apply to gays and lesbians.

Are you surprised to read about this? I'm not. I think part of me is getting used to the widespread ignorance and discrimination that is still around. It's one thing to not be considerate of people based on their sexual orientation, but to deny them taking part in clinical trials?

Unfortunately, no data of this kind are available for European clinical trials, so I cannot tell you if things are just as bad on our side of the Atlantic, but I wouldn't be surprised. 

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This post was first published on eurout.

1 comment:

Holly said...

Its like women are on the bottom of the totem pole. As if.. they don't want to figure us out. Or, we'll just go away..which we won't. Hopefully, some women will get a study going soon.