Chapter 1: What historical changes have impacted women's inclusion in medical trials?
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You're listening to Shortwave from NPR. Hey, shortwavers. Emily Kwong here with shortwave's intern, Aru Nair. Hi, Emily. Hi.
Chapter 2: How did the thalidomide scandal influence medical research policies?
And Angela Zhang, who has joined our team through the Stanford Health Equity Media Fellowship and is an actual doctor.
Hey, Emily. It's so good to be here.
Good to have you. Now, Aru, I hear you have a medical fact you wanted to share with us.
So, Emily, did you know that it wasn't mandatory to include women in medical trials funded by the National Institutes of Health until 1993? Wait, medical trials like drug trials?
Yeah, partially. And these trials are really important. The NIH is the largest single public funder of biomedical research in the world.
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Chapter 3: What are the ongoing challenges in including women in medical research?
Like, I'm a doctor, right? So I'm constantly looking at results of research on different drugs or treatments. And this helps me decide if a test or medicine I'm using is safe or effective for my patients.
And you're saying it wasn't mandatory for women to be included in those until the 1990s?
Yeah, we probably need some backstory here. So there was this global scandal starting in the late 1950s where tens of thousands of pregnant women, mainly in Europe, took this sedative called thalidomide for morning sickness.
People who took the drug while pregnant ended up having babies whose limbs were poorly developed or even absent. This happened to over 12,000 kids. And it led to the Food and Drug Administration creating a policy excluding, quote, women of childbearing potential in early drug trials. That was in 1977.
Chapter 4: How do sex differences affect the understanding of heart attack symptoms?
Oh, so they just excluded most women.
Yeah, exactly. But that's not the only reason that women have been historically excluded from biomedical research.
Women have been seen as either too kind of variable hormonally, like noisy and therefore bad sources of data. And or we have just taken a male body as a standard and used that to produce knowledge for everyone.
So that's Marina DeMarco. She's a philosopher of science at Washington University in St. Louis. And she told us that over time, scientists and activists realized that there was this huge gap in data for research on women. They started pushing for more inclusive policies, and there were even protests about this in the 1980s and 90s.
Chapter 5: What role does the two-bucket system play in medical research?
And Congress listened. They passed a law in 1993 requiring researchers to include women and people of color in federally funded medical trials. Wow. Nice.
Now, women are in a lot more studies. And we study differences between the sexes by enrolling men and women, and then we compare data from each group. But many people say the way we include women in medical research can still get pretty messy.
Today on the show, how we sort the sexes in medicine and why there's a lot of problems with that. You're listening to Shortwave, the science podcast from NPR. Okay, Aru and Angelo, today we're talking about sex differences as it relates to the world of medicine, medical care, medical research.
Chapter 6: How does the medical community address the diversity within sex categories?
And I remember from a previous episode that our colleague Hannah Chin reported learning that sex is hard to define. It can be defined, in fact, by a lot of things like anatomy or hormones or chromosomes.
So many things. And Marina says that confusion can carry over into how sex is defined when you're a patient in a doctor's office.
I've never been to a doctor's appointment where someone checked how many X chromosomes I had or what kinds of gametes I make. As far as I know, no one's ever even measured my estrogen or testosterone levels. And yet my clinical treatment is supposed to be based on
And before we go further, we just want to say that we're using women and men in super binary ways because many studies and experts still use these terms, even though we know that gender and even sex are not binary.
That makes sense.
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Chapter 7: What are the implications of sex-based drug dosing in medicine?
Yeah. So how do researchers or doctors account for this complexity in sex?
Well, we kind of don't. Well. Metaphorically speaking, our medical system tends to sort people into two buckets, a blue bucket or a pink bucket. And it's really easy to do that. But a lot of researchers say that that might cause some problems.
The first one is that we might be missing similarities between the pink and the blue buckets. In many cases, there's a lot of overlap, like with height, for example.
You can look around and you can see, yes, on average, men are taller than women.
Chapter 8: What future changes are needed for inclusivity in medical research?
This is Donna Maney. She's a neuroscientist at Emory University.
But also, as everyone knows, if I say to you, oh, this person is 5'9", what's their sex? I mean, you might be able to guess, but you're not always going to get that right.
Right. I mean, I'm 5'8", and there are plenty of men who are my exact height.
Totally. So Donna says ignoring the overlaps between sexes could have real consequences, like in women who experience heart attacks. How so?
Okay, so the most common symptom of a heart attack, regardless of your sex or gender, is chest pain. But the American Heart Association says that women may experience a wider, less recognized range of symptoms like fatigue or indigestion.
Is that because we have different ways of having a heart attack pathophysiologically, or is it because women present their symptoms in a different gendered way?
Alice McGregor is a doctor at the Medical University of South Carolina. She spent years looking into women's health and medicine and how it might be different than men's, including whether those differences are why women with heart attacks are treated later than men and die at a higher rate.
And at the same time, there's definitely crossover between men and women of who has those symptoms. If we could just make it so that way, these are all symptoms that people could present in and then have those be flagged. That's ideal.
Donna pointed out the same thing. Like, this has real life stakes.
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