"When gender differences are ignored in health studies"
March 17, 2017 9:28 AM   Subscribe

How the assumption that males* are the "gold standard" has led science to ignore women, with harmful and even fatal results.

* I say "males" rather than "men" because, for reasons explained in the article, this relates to both humans and nonhuman animals.
posted by John Cohen (26 comments total) 26 users marked this as a favorite
 
I have been mad about this ever since I read about it a few years ago and I am still mad. I ran into a similar problem today just googling about a urinary issue - of the very few articles that existed, pretty much all of them began "this definitely happens to women too" but then went on to state six or seven possible causes which all involved stuff which might be wrong with your penis as the root cause. The only relevant source I could find was a fucking medical textbook about female urology and even then it did not really have anything relevant to what I was looking for in it.
posted by terretu at 9:57 AM on March 17, 2017 [13 favorites]


"Gender equality has become a monomania that leaves us vulnerable to rather serious blind spots. All things must be “equal” between the sexes, no matter how superficial, while the truth goes by the wayside; not so much as an inconvenience but rather as an irrelevance."

I kind of feel like gender equality should lead to MORE testing involving women/female animals (because we exist and should be studied at equal levels), and describing gender equality as "a monomania" strikes me as weird? Gender equality is not the same thing as identical biology? And this is not even getting into the gender binary.

Anyway, this article's subject is important, I just find this framing weird.
posted by leesh at 10:20 AM on March 17, 2017 [33 favorites]


( By "gender binary" I mean that this article doesn't consider trans/NB ppl.)
posted by leesh at 10:23 AM on March 17, 2017 [2 favorites]


This has bits of useful data in it, but it's an ideological mess otherwise.

The "feminists won't like it, but women(*) metabolize xyz differently" has been a framing device for studies since at least the 1970s. It's as useless now as it was then. I don't think there's a feminist writer anywhere who would argue against a statement that (say) "menstrating individuals are going to need higher calcium doses and more iron to compensate for blood loss" on the basis of ideology.

(*) Estrogen producing people with overies, one assumes.
posted by steady-state strawberry at 10:25 AM on March 17, 2017 [28 favorites]


Somehow the author managed to conflate every possible consideration that health researchers might make with regards to gender, sex and also privilege (because you can't have a thinkpiece without it?) and then blame every poorly tested drug on feminism?

Maybe she had something interesting to say but it got lost in the sea of unconnected examples and "privilege is for special snowflakes" tropes.
posted by martinX's bellbottoms at 10:40 AM on March 17, 2017 [11 favorites]


Oh this is such garbage. My favorite excuse for not doing studies on female populations is that estrus might interfere with the results.

INTERFERE.

Honestly I'm not gonna be able to comment on this without getting really angry, because I am female and I have medical issues that are poorly understood at least partially because they are coded as women's issues, and thus dismissed as psychological or uninteresting or simply delusional. The shadow of systemic sexism is particularly long when it comes to understanding our bodies, and that this happens over and over again, with a myriad of different excuses, kind of points to the fact that the explanation is as it ever was: we are not important, and nobody really cares.

This is still ongoing. And it's a technical debt that will take literally a generation to repair. If we start now.
posted by schadenfrau at 10:42 AM on March 17, 2017 [34 favorites]


Also, the accusations that people arguing against *behavioral* differences between men and women of secretly harboring misogynistic beliefs (and devaluing feminine traits) reveals the bias of the author. Isn't it possible that the writers genuinely believe their arguments? Or that they have a point about issues associated with culture?

Feminism has always been in a lose-lose situation when it comes to gender differences. Differences between the sexes was used to justify, for example, the exclusion of women from juries-- women just aren't suited for legal decisions! But arguing for an absence of gender differences just reversed the argument-- if women and men are equivalent, then why should you care about the gender balance of a jury? One might argue that identifying gender differences would discourage studies of female mice -- why complicate a study? But easier to blame feminists for the biases found in pharmaceutical research.

Finally, it's interesting how many times childbirth comes up. The thalidomide study, for example, is almost unnecessary. The ways women choose to exclude themselves from drug testing are again clearly due to fertility. And libedo has nothing to do with "women's wellbeing," clearly.
posted by steady-state strawberry at 10:43 AM on March 17, 2017 [9 favorites]


It's a Commentary article. They don't like feminism or gender theory and are happy to undermine either in the name of women's health.
posted by fraxil at 10:43 AM on March 17, 2017 [4 favorites]


The social construction model of gender combined with the awful mess of biological essentialism harming women in medicine throughout history *has* created a contemporary impasse between feminism and science.

We need to look for a model of talking about bodies that deconstruct sex and gender to value-less propositions. The issue is that feminist discourse *is* influencing the ethical boundaries of scientific research, and for good reason! Biological essentialism resulted in horrific results for women.

so on one hand, scientists need to own up to that and come up with better ethical guidelines and radical feminists need to have a seat at the table to that discussion.

I experience this all first-hand, I am literally caught in the crossfire of this current impasse.
posted by Annika Cicada at 10:44 AM on March 17, 2017 [7 favorites]


I'm not going to bother reading an article in Commentary, but this is a real question.

To those interested in a sophisticated take that's well-researched and in good faith, I can recommend Inclusion: The Politics of Difference in Medical Research. It's an academic book by Steven Epstein, a sociologist. I remember it as very readable, although it's not written for a popular audience. Anyways, Epstein does a very good job laying out the complicated politics of including diverse populations in medical research--including the ways that inclusion can reinscribe biologically essentialist ideas about race and gender.

I can't find a popular account of his research, so most stuff on Epstein is behind paywalls. But here's a non-paywalled summary of the book: a statement issued by the American Sociological Association when they issued him their 2009 book prize.

From a review in the NEJM:
Inclusion offers a balanced analysis of the positive and negative effects of institutional changes on groups that are traditionally underrepresented in biomedical research and on biomedical research in general. However, the improvements have been limited. Ironically, the momentum that was created by the inclusion-and-difference paradigm and the focus on a short list of subgroups that were politically determined to be medically relevant have hindered the effort to redress health disparities. Epstein makes the pivotal point that the inclusion-and-difference paradigm diverts attention from the examination of pathways leading to disparities in health and health care. He cautions against rooting differences in health in biology, because it may reinforce old hierarchies, thwart efforts to find other ways to conceptualize differences in subgroups, and result in the racial profiling of patients.

The book ends with a call to move the paradigm forward. Given the commitment to social justice that underpins the inclusion-and-difference paradigm, Epstein proposes that more than just the inclusion of subgroups and the examination of differences between them must occur. Fundamentally, it is important to institutionalize policies and practices that examine the causes of differences in power that lead to health disparities.

posted by col_pogo at 12:12 PM on March 17, 2017 [5 favorites]


How interesting, that the real people to blame for scientific misogyny are women! Who would have ever guessed.

Is there anything feminists can't be blamed for? This is a hypothetical question, because of course, the answer is no.
posted by a fiendish thingy at 12:59 PM on March 17, 2017 [28 favorites]


I actually work in the lab of one of the main researchers who pushed for sex as a biological variable! It's a very sticky situation, even in our institution - I recently took a biomedical engineering class that involved mock grant writing, and the professor very begrudgingly stated that we might have to include female animals in our research "even though the data is messier." The same concerns about "messy data" absolutely extend to clinical trials, where companies try to cut down on variability as much as possible.

If researchers were funded on more than a shoestring budget, perhaps they would be more amenable to including women in their studies - especially given the current climate, where non-significant results are often overlooked for further funding.
posted by Creatine at 1:07 PM on March 17, 2017 [4 favorites]


Amazing that the author gets away with implying that those dastardly liberal FDA bureaucrats were screwing over women, despite that the time periods she focuses on (the 1980s and 2000s) were almost entirely periods run by two very misogynist (let alone anti-feminist) and highly conservative Administrations. Conflating that with a single author that the piece focuses on because Cahill seems to have a big ol' axe to grind smacks of personal bias in Cahill's favor. And then on top of that, she provides almost nothing in terms of linking feminism and gender theory with what happened. For instance, the issues around testing animals in estrus could just have easily, if not moreso, from male scientists confused by ladyparts who never bothered to consult women in their fields.
posted by zombieflanders at 1:27 PM on March 17, 2017 [8 favorites]


It's a Commentary article. They don't like feminism or gender theory and are happy to undermine either in the name of women's health.

They're not undermining them in the name of women's health, either. They're just as anti-woman as pretty much every other right-wing magazine, whether it's feminism, women having autonomy over their bodies or in society in general, or having the temerity to speak up about issues that affect them.
posted by zombieflanders at 1:31 PM on March 17, 2017 [5 favorites]


( By "gender binary" I mean that this article doesn't consider trans/NB ppl.)

"gender binary" usually means the idea that the only genders out there are neatly approximated by "man" and "woman", rather than something about biology. Many/most trans people's genders are reasonably well approximated by one of those categories. The kind of biological essentialism that ignores trans and non-binary people here has a side effect of reinforcing the gender binary, but I'm feeling the need to remind everyone that plenty of trans people share a gender with them, not some asterisked version of their gender.

posted by hoyland at 3:23 PM on March 17, 2017 [3 favorites]


UGH, I am so sorry, i was typing those comments as I was running to a dr's appointment and I jsut meant that I felt like the author was being super gender essentialist, but then wasn't sure that was the right term, and I was trying to say that gender is complicated and this author seemed to have a weird and simplistic view, I am sorry that I expressed that so badly, and appreciate being called out for same, hoyland.
posted by leesh at 7:08 PM on March 17, 2017 [2 favorites]


> The same concerns about "messy data" absolutely extend to clinical trials, where companies try to cut down on variability as much as possible.

Sweet Deity, this.

Everyone wants small error bars, because they are sexy. Small error bar sell.

I became frustrated when I have to explain 1) there are intrinsic variabilities and small errors are more than often too good to be true, and 2) the smaller the variance, the more devastating the possible unreckoned biases. I'm on the brink of giving up.
posted by runcifex at 8:53 AM on March 18, 2017 [3 favorites]


I'm having deja vu -- wasn't there just an interview on NPR about this, a few weeks ago, with the exact same examples? Was Claire Lehmann on NPR? Google is not helping me.
posted by lazuli at 12:15 PM on March 18, 2017


Ah, found it. It was on Freakonomics Radio.
posted by lazuli at 12:31 PM on March 18, 2017


If researchers were funded on more than a shoestring budget, perhaps they would be more amenable to including women in their studies

If adding females to a study make the data sufficiently messy, doesn't that suggest that separate studies on females are necessary?

Even if funding is scarce, what would prevent scientists from performing studies on only female animals? (Rather than adding a few females to a study on males, or always using males as the default?)
posted by evidenceofabsence at 3:39 PM on March 18, 2017 [1 favorite]


A family friend works as a janitor at the research center of a major pharmaceutical company. They have to fill out forms in triplicate when they change a lightbulb, because a new light could potentially alter the animals' behavior and change the results of trials that have been running for months or years.

As for a separate set of tests --how much more time and money are you willing to require companies invest in a new drug? More importantly, how much are you willing to recoup those costs? Clinical trials are incredibly expensive already, and adding on an additional burden will just increase it.
posted by steady-state strawberry at 4:03 PM on March 18, 2017


Considering that the current state of affairs has led us to a point where practically no drug has been tested and deemed safe for pregnant women, so when I was pregnant I was constantly having to make uninformed choices with things as simple as cold medication because every single thing is labelled "do not take if pregnant"... I guess I would pay quite a bit! (Hell, even my miscarriage meds were prescribed off-label.)
posted by sadmadglad at 11:11 AM on March 19, 2017 [2 favorites]


As for a separate set of tests --how much more time and money are you willing to require companies invest in a new drug? More importantly, how much are you willing to recoup those costs? Clinical trials are incredibly expensive already, and adding on an additional burden will just increase it.

I’m sure you mean this to be realistic instead of upsetting, but upsetting it is. This is why having our entire pharmaceutical industry based on profit (and not just profits, but obscene and immoral profits) is such a colossal crime.

You are furthering the claim of these companies: that medical treatments only make sense if they are profitable. This is hateful, and as we continue to learn, it is also often fatal. (I’m guessing most of you have already read this article? "Remember the People America's Healthcare System Has Already Killed." If not, let me sum it up: if your condition doesn’t affect enough people, neither pharmaceutical companies nor insurance companies are interested in helping you stay alive, or even to improve your quality of life while you wait to die. To do so might hurt their profits, and hurting profits is the greatest sin of all in corporate America.)

When trials are never run on female subjects of any species, then we don’t actually have any idea how medications might impact the women or trans men who take them. This hurts and kills people. The refusal to run trials that account for these incredibly basic factors is not money-saving: it is dangerous and it is absurd. As sadmadglad points out, not being able to tell pregnant women whether or not they can take miscarriage prevention drugs is the height of absurdity.

The fact that these trials are not run in the name of profit is not an excuse. It is an outrage.

The actual FPP article is misogynistic anti-feminist clickbait, but the issue it uses for faux-outrage is an actual outrage.
posted by a fiendish thingy at 6:09 AM on March 20, 2017 [8 favorites]


As a result of this widespread fear, scientists making discoveries about sex differences have been labeled “neurosexist,” accused of producing “neurotrash” and “populist science.” One result of the controversy may be that it has deterred many others from going into the field altogether.
feminists are driving budding neuroscientists away from the field, maybe!!
In his 2016 foreword, Cahill writes: "Fortunately, times are changing. The past 15 to 20 years in particular witnessed an explosion of research (despite the prevailing biases against the topic) documenting sex influences at all levels of brain function."
Except that evidently the research is happening. Feminists aren't successfully preventing it.


Also the author keeps skipping round between different kinds of research, and eliding some important particularities.

His first few examples are things involving sex and reproduction - thalidomide, and a drug that was supposedly the female equivalent of Viagra. But the opposing feminist argument he uses as an example is Cordelia Fine, whose book "Delusions of Gender" focuses on supposed sex differences in the brain and the mind.

That's not like-to-like. It sounds ridiculous to say there's no difference between "male" and "female" genitals, but it may well be true that there are no gendered differences in the brain.

And it's definitely true that women are understudied, full stop, and the female reproductive system isn't as well understood as it should be. It's also simultaneously true that historically, when scientists study supposed sex differences in the brain, their studies don't show a lot and their reports are used to further the oppression of women.

IIRC that's the actual thrust of Fine's book. She holds back from making the affirmative statement, "There are no sex differences." She says that the evidence for them is wholly inadequate, tainted by over a century of misogyny, and should be discussed carefully and with an open mind. (Also, it's not clear how the physical structure of the brain maps to the mind.) She's a voice of caution to counterbalance the bajillion breathless pop-sci articles.

So, as the author asks, Why on earth would anyone wish to deny the self-evident truth that the biological differences between men and women from size and shape and bone structure down to the very XX-XY chromosomal separation would have second-order effects on health, the metabolization of medicines, and the way diseases work inside the body? Mostly no one, not even feminist ideologues, are denying those physical differences. And in fact plenty of feminists have written about this very issue, demanding better medical research for women.* But there is good fucking reason to argue about the details and implications of those sex-based differences, especially when it comes to the brain.

*Sorry I can't cite the feminists who have written about disparities in medical treatment and medical testing, but I've definitely definitely read about the issue before. Probably on Shakesville.
posted by Rainbo Vagrant at 1:38 PM on March 21, 2017 [2 favorites]


Oh and I'm not done yet
In 2013, Fine collaborated with three others on an article in Frontiers in Human Neuroscience. They argued that sex should not be viewed as a “categorical variable,” but rather as a “dimensional trait-based variable.” Allow me to translate from the gibberish: Fine and her colleagues were saying that sex should simply not be viewed as biological fact arising from sex chromosomes, but should be evaluated as “stereotypes,” “gendered experience,” “gendered attitudes,” all of which needed to be measured and included as “dimensions” of gender.
that is actually the correct way to view sex and gender, insofar as there is any correct way. There are many different biological facts which may arise from the sex chromosomes and they don't always all line up. For example, most of the most obvious sex differences are caused by the action of estrogen and testosterone, so it's trivially easy to get the "wrong" biological result by introducing the "wrong" hormone artificially, and that sometimes happens naturally too.

In addition to the physical facts, sex is also a social construct in that is a system of categorizing people.

and gender has at minimum these dimensions:
- the legal record of the person's gender
- the way the person sees themself (gender identity)
- the way they present themselves to others (gender presentation)
- the way other people (society) interpret the person's gender presentation
--- and the various social pressures that go along with that
- the way the person feels about the social experience that their gender presentation brings them

which, again, do not always all line up, and most certainly do not have to line up with the categorization of their physical sex.

The author also has the wackiest fucking take on intersectionality
[Fine] went on to argue that neuroscientists should be schooled in the theory of intersectionality—“the principle that important social identities like gender, ethnicity, and social class mutually constitute, reinforce, and naturalize one another.”

At first glance, this is a peculiar demand. Intersectionality, a theory developed by the law professor Kimberlé Crenshaw in the early 1990s, derives not from the biological but the social sciences.
It's not so peculiar when you remember that Fine is talking specifically about neuroscience. It's not clear how the brain maps to the mind, but it is very clear that the mind does shape the brain, and it's not ridiculous to say that a person's social and cultural identity is relevant to questions of neuroscience.
Crenshaw argued that feminism as an enterprise had neglected issues of race, and that feminism should recognize intersecting social identities. So to practice intersectionality, one must privilege the voices of black women over white women, and the voices of women over men, for example. The least privileged deserve the most sympathy; the straight white male deserves the least. The relevance of Crenshaw’s work for neuroscience is unclear at best. But its utility as an ideological weapon has made it popular among academics hoping to politicize scholarship and silence their enemies.
I don't think that's what intersectionality is.
posted by Rainbo Vagrant at 2:21 PM on March 21, 2017 [2 favorites]


Interestingly, C&E News Magazine (the glossy magazine of the chemistry world) just came out with a story about sex biases (*) in biomedical research, and efforts to address them.

It's way less overwrought than TFA, although it also emphasizes how many problems don't have easy answers. Researchers who rely on a 50/50 split (for example) may have to accept a loss of statistical power. (Unmentioned: the gold standard (running two experiments in parallel) involves a lot more animal testing, which I think many people would be uncomfortable with.)

It's worth a read.

(*) Caveat: the discussion heavily relies on a gender binary. To be fair, the discussion also involves a lot of mice.

***

if your condition doesn’t affect enough people, neither pharmaceutical companies nor insurance companies are interested in helping you stay alive, or even to improve your quality of life while you wait to die. To do so might hurt their profits, and hurting profits is the greatest sin of all in corporate America.

And yes. This is a known problem associated with capitalism. This is also scope creep -- going from criticizing a single facet of the system (gender biases associated with drug testing) to the system as a whole. If your problem is the entire system, then arguing against one bit of it is bad faith.
posted by steady-state strawberry at 9:25 AM on March 23, 2017


« Older Irish Slavery   |   True Dreams of Wichita Newer »


This thread has been archived and is closed to new comments