Season 2 |
Episode 6: Leading Change with Resilience with Dr. Pilar Ossorio
[00:00:00] Rori: Hi, listeners. We wanted to give you a heads-up that today's episode has some discussion of sexual harassment.
Listener discretion is advised.
[00:00:08] Emilia: You're listening to ScienceWise, the podcast designed to inspire people embarking on a career in science through conversations that will feel like talking to your wisest auntie.
[00:00:18] Rori: Who just so happens to be a badass scientist. I'm Rori.
[00:00:21] Emilia: And I'm Emilia.
If you're new to the show, we're two scientists on a mission to make the world of science more welcoming and amplify the contributions of women.
[00:00:30] Rori: If you want to learn more about who we are, you can check out our first episode of ScienceWise.
[00:00:35] Emilia: Today, we're delighted to introduce Dr. Pilar Ossorio, who is a supremely accomplished scholar working at the intersection of human genetics, law, and bioethics. She's currently a professor of law at the University of Wisconsin-Madison and an elected fellow of the American Association for the Advancement of Science.
Unlike most legal scholars, Dr. Rosario did a PhD in microbiology and immunology. She hails from rural Colorado and successfully navigated academic science and law, including confronting misogyny and creating systematic change. Today, we're going to hear about how she made it through those systems to develop a strong voice, providing bioethical guidance for national human research projects like the 1000 Genomes Project and the Microbiome Project.
Pilar, I am so happy to see you again and to hear your voice. Before the pandemic, I used to always look forward to SING, which is the Summer Institute in indigenous genomics. You and I, you both used to go as instructors. And one of my favorite things to do was to make you come to a dinner with me because you like really good food, and you're really fun to be around. I miss that.
[00:01:54] PILAR: I also remember those dinners very fondly.
[00:01:58] Emilia: I hope we can do that next year. Hopefully. So we want to know a little bit about your upbringing. Where did you grow up? What was your childhood like? Tell us.
[00:02:11] PILAR: Uh, my father's parents immigrated here from Mexico when he was a teeny tiny baby. Um, and he grew up in South Central Los Angeles.
He didn't really speak English until he was in high school. I grew up in Colorado, north of Boulder. My dad was a professor. I believe he was the first Spanish-speaking professor who was hired to teach something other than Spanish. He was hired into the psychology department and also taught in some other departments as well, including in philosophy and mathematics.
And then my mom was a grad student and ultimately also an adjunct professor at the University of Colorado, so I did come from a very academic family. Grew up, um, in a very rural community, though. Not only were we the only family who, uh, was. Not considered white. We were one of only two families who did not attend the same church, which I believe was a Lutheran church.
[00:03:13] Rori: Oh, wow.
[00:03:15] PILAR: And, uh, I actually went to elementary school in a two-room schoolhouse, where one room was first, second, and third, and the other room was fourth, fifth, and sixth. And we had music classes in the boiler room.
Yeah, and it turns out that there are some real advantages to going into a school like that. Um, there are, of course, many disadvantages in terms of lack of resources. Um, but if you're in a class of 1st, and you're working ahead of grade level, if you're in 1st grade, you can easily work on 2nd or 3rd grade work because you're all in one classroom together, right?
It was actually for, you know. A public school education. Uh, it was a fabulous education. I have to say, and I think that kind of take responsibility for your own learning. Um. Stood me in good stead when I got into undergraduate and especially into graduate school, you know, where I had already developed blaming like when I was in high school biology class.
You know, if we had questions that our teacher couldn't answer, then he said, Okay, you know, find some people at the university who work on this area, and I'll call them up and help you arrange to, like, have a meeting with them to explore this topic further, right? Like this idea that you were just going to be proactive about learning things was very much built into that education.
And so I think it, you know, when, once you get into graduate school in particular, I
think,
[00:04:50] Emilia: Yeah, I mean, that's one of the things that grad students have to learn. You mentioned that your dad is Mexican American. What about your mom?
[00:04:58] PILAR: So my mom is Russian and German Jewish immigrants. That's her family background, but her family basically all went from Europe to Latin America before World War II.
[00:05:15] Emilia: So what was your household like? Was there, were there Jewish traditions and Mexican traditions?
[00:05:20] PILAR: So very interestingly, there was my mother in particular, she definitely wanted us to know my father's family traditions. So she spent a lot of time with his mother, like, you know, really learning how to cook the way his family had always cooked.
Right. And not just the way her family had cooked and things like that. But she also would like to bring other students from India who she knew from graduate school to the house to teach us about Indian traditions and to celebrate Indian traditions from India. Like she was very ecumenical, just liked to celebrate things, basically.
Um, so, so we kind of celebrated a lot of traditions and, um, I, I think in some ways, and especially religiously, I think my parents definitely tried to downplay any particular religious connection as being like, this is a connection that you particularly own. So we didn't, like, we weren't bar mitzvah or bat mitzvah.
We never went to any church. We're perhaps more engaged with the traditions of the clearly, deeply rooted Mexican side of our family. And in part, that was my mother's set of choices to keep us connected to my dad's family. So, yeah. And there was also a whole thing about language. Because, you know, my father My father had a pretty strong accent, and he went to college at a time when, um, being Mexican American was not, um, you know, diversity was not celebrated, let's just put it that way.
And his professors would, like, humiliate him in front of the entire class for speaking with an accent. And so he was bound and determined that his kids were not going to speak English with an accent. And my mom really wanted us to speak Spanish, uh, but my dad wouldn't speak it in the house. And so they compromised, and the compromise was that we should learn to at least read and
write it.
[00:07:35] Rori: So you had grown up in like rural Colorado, and then you landed in Palo Alto. Why did you choose to go to Stanford?
[00:07:42] PILAR: I applied to a lot of schools. Um, I went to a lot of universities and was accepted to all of them
[00:07:49] Rori: .Dang,
[00:07:50] PILAR: We didn't have the money for me to go visit colleges. And so I was making the decision based on, you know, sort of, and this was pre internet days.
So it wasn't like I saw a bunch of photos of any of these places, and I had never been to any, I had never been to the East Coast. I had, I had been around a lot of states in the West, though, so maybe that, you know, influenced me a little bit. I mean, I had been to California, um, and I had certainly not been to Massachusetts, um, But I thought both Harvard and Michigan had like really arrogant sort of attitude that they, you know, like they would send these letters like, well, we can't tell you that you've been accepted until the acceptance deadline, but you know, just hold open the possibility that you'll be coming here and don't say yes to anybody else until you get our letter.
And I'd be like, Oh, come on, that's just sleazy. I just didn't like the tone of a lot of their materials. Whereas Stanford was sort of like, they send you this acceptance letter that says, you know, don't think you're so special because you got in here because there were lots and lots of really qualified people.
And the fact that you happened to get in was kind of an accident of how we have to compose the class and stuff.
[00:09:04] Rori: Whoa.
[00:09:05] PILAR: Yeah, the Stanford band also helped. They came to play at a preseason game in Colorado at the University of Colorado. And I don't know if you guys know anything about the Stanford band, but it's like the anti marching band.
So in fact, they wear these like really goofy sort of clothes. They don't wear, like, they look more like a, uh, I don't know, like a Um. Old time, maybe a sort of jazz band or something. Anyway, they don't march. They all kind of like run out into the field like a mob, and then they make these formations that are very.
Untraditional Let's just say and they also don't play traditional marching band music. They played kind of pop and rock and occasionally obscene. And. I was just like, okay, this is the school for me, right? It's like this, I just, it just seemed more consistent with my personality.
[00:10:09] Rori: Wow, it's interesting to imagine like Pilar at 18 who had really taken charge of your own education and then you see these, this kind of like wacky band where people are doing their own thing.
You're like, that's the one. . Those are my people.
[00:10:30] PILAR: I knew that they had huge graduate programs and that the research enterprise was just such a huge focus of this school that I saw. You know, if I want to work in a lab, which I knew that I did as an undergraduate, I would have lots of opportunities.
[00:10:46] Rori: But you, you kind of went from Stanford undergrad to being a PhD student there too. Why did you decide to stay at Stanford?
[00:10:54] PILAR: By the time I got done with undergraduate and was applying to grad schools, I still didn't have any money. Um, and so at that point, I was really clear that I was only going to go to grad school someplace where I could actually visit.
I had a strong belief that you have to find somebody who you feel like you'll be comfortable working with that person and being mentored by that person and spending hours and hours and hours of your life in that person's lab. And in the end, I narrowed down my choices to John Boothroyd's lab at Stanford and Elizabeth Blackburn's lab at Berkeley.
So John was a brand new professor and, uh, Dr. Blackburn was already getting pretty famous. And so she couldn't, you know, like she was really supportive and helpful, but said, I can't guarantee that there would be a space in my lab by the time you get done doing rotations. Whereas John was just starting his lab and he could really guarantee that he would have space in his lab for me.
So that's what made my decision. At the time I entered graduate school, I was the only quote unquote underrepresented minority person in the biological sciences graduate programs at Stanford for the first like maybe couple of years that I was there.
[00:12:13] Rori: In all the biological sciences?
[00:12:15] PILAR: In all the biological sciences.
There were definitely others in, in the medical school. But other than that, all of the minoritized students, grad students were in like the humanities or the social sciences. And I don't know if there were any in like physics or anything like that, but in the biological sciences, I was the only one for a couple of years.
[00:12:38] Rori: Wow. When did you start your PhD?
[00:12:39] PILAR: In 1984.
[00:12:41] Rori: Okay.
[00:12:42] PILAR: And so I used to get a phone call from like. Some provost, like every quarter because Stanford was on the quarter system, you know, just get this random phone call. Like, so how's it going? How are your classes going? You know, it wasn't, it was like a year, a year and a half before I realized that. Every graduate school student didn't get that phone call.
[00:13:07] Rori: Wow.
[00:13:08] PILAR: And I'm sure they were checking up on me just to make sure that I wasn't completely flailing because I was the only one.
[00:13:17] Rori: Wow.
Wow. And that's the way they did it, too. They were like, we'll give you a personal phone call from a provost.
[00:13:24] PILAR: Yeah, exactly.
[00:13:25] Rori: This is going to do the job.
[00:13:26] PILAR: Yeah, yeah, yeah. Now, that said, uh, my advisor. John Boothray was, um, uh, he was phenomenal in every way I could possibly think of. I mean, intellectually and scientifically, but also really as an ally and support. So I was always kind of the little bit of the activist and, and he was actually also pretty patient with the fact that I spent time with different, you know, The rape education prevention group on campus and different like feminist groups on campus and And he was supportive of those kinds of activities and didn't complain about it taking time away from my lab work or anything like that and when I would you know when I would bring up issues about how things were going in the lab or You know, the fact that the St.
Polly girl's boobs were in my face every day because somebody was plastering those calendars all over the lab. You know, he would listen to me and take me seriously and he was just, he was a really great mentor. You can never predict those kinds of things. You can do your best to try and figure out who is going to be a good fit for you.
But he was new, it wasn't like I could talk to other grad students who had been through his lab before, right? And kind of get the, get the scoop that way. It was kind of an instinctive decision that I made, but I have to say, like, one of the things I did, I knew I wanted to, you know, be on a faculty. So, I got on the appointments committee for the department as the graduate student representative.
And the two years I was there, we hired the first woman scientist into our department.
[00:15:11] Rori: Oh my God.
[00:15:12] Emilia: Who was that?
[00:15:12] PILAR: Her name is Cluster. He hauled out and she's she had grown up and done college in India and then grad school school and postdoc in the U. S. as another small brown woman. People everywhere always confuse us for each other.
Even though we looked. Not particularly like at all. Um, but we totally went with it. So we used to like pretend we were sisters sometimes, which people also always believed.
[00:15:42] Rori: Wow.
[00:15:42] PILAR: It was completely ridiculous. But I have to say that, you know, it was one of those things where as supportive as John was, um, and still is for that matter.
Having a woman of color in the department as a faculty member and someone who had dealt with some of the things that I might have dealt with or, you know, could anticipate dealing with or had dealt with was just super helpful after we hired her. I kind of glommed on to her in some ways because It was really nice having her around.
[00:16:16] Rori: Yeah. I mean, you're talking about dealing with some kind of inherent misogyny and racism that's just in the water with these kinds of sexy sexist calendars being put up with like whatever people are making all kinds of comments and assumptions. And it sounds like you really. How did you feel like it helped to solve some of that by being on the appointments committee and impacting who was hired there?
And then, and it worked. You're like, Thank God she was there.
[00:16:47] PILAR: Um, you know, I don't know that I can take too much credit for Cass's hiring, although I will say that, um, I did spend a lot of time with her when she was interviewed. And there was a point when one of the senior faculty. Said some things in the interview to her one on one that outraged her so much that I was driving her back to her hotel and she's like.
I might have to sue him. Oh my God, not only is she not going to come to our faculty, she's going to end up suing us.
[00:17:23] Rori: Oh my God,
[00:17:24] PILAR: I was like, oh my God, when she came out of that interview and she's like. He was asking me all these things about what was I gonna do when I got pregnant as though for sure I'm gonna get pregnant and yadda yadda yadda.
She was so mad.
[00:17:39] Rori: I mean, as she should be. I'm glad she had you to talk to.
[00:17:42] PILAR: Exactly, and it was it was like one of those moments when I thought okay, like I really want her to come here and you know and Um, and. As sometimes happens like, Okay, this is a super famous, well known scientists who we all know is a sexist jerk.
And I basically said that and I said, you know, you know, but it's just like he's not actually a jerk. He just doesn't know better. And here is how, like. The women in the lab handle him when he asked them to type his stuff for the Oh, and then they just say. No, and go find someone else to do that for you.
[00:18:25] Rori: Yeah.
Um, you had the real talk right there. Is there anything that you have particularly fond memories of in your time as a practicing bench scientist?
[00:18:36] PILAR: There were a couple of times when I developed an autorad and looked at it and that. This is like the coolest thing in the world because I am seeing something about the world that no one ever saw before.
And that, that's pretty amazing. I feel like probably I did contribute to the atmosphere in our department, really improving a lot for women in particular.
[00:19:05] Rori: I'm going to ask you about that. What did you do? You mentioned that you were like a little activist in, uh, graduate school.
[00:19:11] PILAR: Oh, various ones. So and this also I will credit, uh, the, the person who was chair of the department when I was there too, which was Stan Falco.
And I rotated through Stan's lab. So Stan had a grad student. Who shall go unnamed because he's now a famous scientist, um, very highly regarded, but at the time was rather immature young man who was just, Oh my God, he would photocopy his genitals and put the photocopy on the inside of like, you know, some, cabinet that everybody opens. Right.
[00:19:49] Rori: Really?
[00:19:50] PILAR: Yeah. Or he would take the sheep's blood. This was one of his tricks that he did one time. Take the sheep's blood that we used to make blood agar plates. Dip a bunch of tampons in the sheep's blood so they had a bunch of blood agar tampons. This is a very intricate stuff. So that somebody walked around a corner and smacked face-first into a mobile of bloody tampons.
[00:20:19] Rori: Jesus Christ.
[00:20:21] Emilia: This is very intricate stuff.
[00:20:23] Rori: Yeah, this is like thought through.
[00:20:24] PILAR: This guy spent way too much time on these, like really weird, you know, sort of juvenile. Inappropriate, unprofessional and sometimes very misogynistic kinds of things.
[00:20:40] Rori: Yeah.
[00:20:40] PILAR: So I just got right up in his face. And then I went to Stan because we were in Stan's lab and I said, look, you know, this is not okay.
And I feel like I can make him stop. But if he doesn't stop, will you back me up? And Stan said, yes. And so basically got. A lot of that behavior changed.
[00:21:01] Rori: What did you tell him? You just told him, like, cut this the fuck out?
[00:21:05] PILAR: Yeah, I was like, You need to take down all of this crap that you've been putting around the lab and this, this, and this and, you know, come on, get over the whole bloody tampon thing because he did bloody tampons a couple times.
I'm like, really? This is really not fair to the women in the lab and to all the rest of us who have to put up with this BS and so, you know, you need to stop and like I just did recruit some other people also to the cause of actually confronting this behavior and not just letting it go on.
[00:21:36] Rori: So you like directly confronted him and you kind of like grew a little community of people who could do it together.
[00:21:42] PILAR: Yeah. But then one of the really bad ones was that there was this professor who was collaborating with the lab that I was rotating in. And this guy. was just disgusting, and he would call, so he was collaborating with the postdoc I was working with, and when he would call, and I would answer the phone, the guy would, like, start talking about how, you have such a sexy voice, Pilar.
Why don't you come over to my office and we can talk some more.
[00:22:12] Rori: Oh, that's so gross.
[00:22:13] PILAR: Just gross. I would keep trying to redirect him back to the science, and he would keep going right back to total sexual harassment. And I do not know if he treated anybody else that way, but I assumed that he had, but nobody in the lab, the other, the postdoc, and the previous grad student were both men.
And so I told the postdoc, I was like, you know, this is not okay. And I should not have to be like, even talking to this guy because he won't even have a conversation with me about the work. It's all about how sexy I am and how sexy my voice is and yada, yada, yada. No woman should have to deal with this, and I went and banned from the department.
[00:22:53] Rori: Yeah.
[00:22:54] PILAR: And so I went to Stan and I said, Stan, I don't think I should have to put up with this. So, as long as I'm here, I don't think he should be able to come. I don't think he should be able to come into the lab. I don't think he should be able to come onto our floor because the guy will not leave me alone.
And Stan said, okay.
[00:23:10] Rori: Dang.
[00:23:12] PILAR: The guy came to me with the postdoc, and I'm like. You and I need to have a conversation. Let's go into the break room. And I just read to do the right act. Oh my God, I was so mad at him. And I had like written out for myself and practiced what I was gonna say. Just read the right act.
And I'm like, and you can check with Stan, but for now you are banned from our department.
[00:23:39] Rori: Wow.
Wow. But that worked. You just like, asserted a really strong boundary, got back up from the person with political power and then like. Boom.
[00:23:53] PILAR: Totally. Totally. And I was like, thank God, I'm like, I don't have to talk to this guy.
[00:23:59] Rori: That's so impressive, though.
[00:24:00] Emilia: I know. I don't think I would be able to do that, like when I was a grad student. So that's pretty impressive.
[00:24:06] PILAR: You know, I've thought about this, like I was more inclined to do it then than I even am now, mostly because now nobody that I've come into contact with in the last, say, 10 to 15 years behaves anything like that anymore.
I mean, there is. Still plenty of sexism and racism as a senior colleague of mine once said Pilar pick your back And this is a person who was an african american first in all kinds of ways and that battle in particular With that guy was totally worth fighting because he was just such such a lazy creep.
[00:24:39] Emilia: I'm glad that the chair of the department had had your back as well.
[00:24:42] PILAR: I was incredibly fortunate in that right that John always had my back.
[00:24:49] Rori: I mean, it's fortunate, and it's also like, as it should be. Like, of course you should have. What would he say? No, we're going to invite this guy in. No.
[00:24:56] Emilia: I mean, because otherwise, yeah, they make you feel like you're the crazy one.
You are a scientist, you have all this training, and you did a PhD, a postdoc, but then you went to law school. So what happened, Pilar?
[00:25:12] PILAR: From high school, I'd been really interested in sort of the way that science, um, goes out into society. And And And And And And And I was kind of thinking about the fact that like, what if I did the most brilliant science in the world and did something that could be, you know, some cure for some really important disease, but no one could get it because of various policy decisions.
So I had all along been thinking about those kinds of questions. And actually. Stan Falco, in a completely just passing comment, one night late in the lab, he and I were talking about like, what are people's motivations for doing science? And, and he said, you know, most of us who really make a career out of bench scientists, it's, it's about like, we're very curiosity driven and a little bit obsessive about some scientific questions, because if we really wanted to help people, We'd be cloning toilets, not genes.
And his point, of course, was that it's not sophisticated molecular biology that has the most overall impact on human health. It's basic public health interventions like good sanitation that over time have actually probably made the most difference and not sophisticated. Drugs and things like that, but it was something that always stuck in my mind that you could be a really great scientist, but if you wanted to have an impact in the world, like the science itself was not enough while I was a postdoc and in the lab, I just started going to like every bioethics talk at Yale that I could find and yell had to like super famous bioethicists at the time when the law school when the med school and there were lots of talks in bioethics.
Um, I just started reading bioethics. I applied for a AAA, a short course in bioethics, and did that. And then, I just basically wrote a paper and submitted it. And it got accepted.
[00:27:14] Rori: Wait, were you, were you a postdoc when you did that?
[00:27:17] PILAR: Yeah, I was a postdoc. Elsie had just started. Right? So ethical, legal, and social implications of the Human Genome Project.
So the Human Genome Project started in the early 90s and with funding from Congress that required that they have an ethics component. And they wanted somebody to be part of the first grant reviews for the ELSI grants that somebody with scientific training. And apparently they couldn't find a more senior scientist to sit around and read a bunch of grants in, you know, philosophy and sociology.
So they asked me and I said yes. And so I was the scientist or ultimately one of two scientists on maybe the first LC grant review committee. And so I got to know a lot of people in the field. And then I got invited to be on President Clinton's Health Care Reform Task Force as one of the three youngest people on that task force. to be part of the bioethics working group.
[00:28:19] Emilia: So you mentioned that you were part of the task force, which there you had the opportunity to meet other people working in law and bio, bioethics. So what drew you to bioethics?
[00:28:30] PILAR: It just, the questions were always really interesting to me. And actually one of the things I like about both legal scholarship and bioethical scholarship is that you can take theory, then you apply theory in this really.
Practical set of problems, and I feel like in some ways the best bioethics does that too.
[00:28:50] Rori: You've been like, uh, you know, an instrumental participant in the discussions that were involved in like some of the super high-level human genetic data kind of projects that have happened in the last decades, like thousand genomes.
How was it to work on these sometimes complicated projects as somebody with this highly interdisciplinary background?
[00:29:13] PILAR: I, I mean, that's such a complicated question. Usuall,y it was incredibly interesting. Um, and I think for me, like, actually, one of the dangers is that I get sucked into science and forget to be an emcee, right?
And so I have to kind of discipline myself to make sure that what I'm bringing to the table is what the project needs me to bring to the table. There are, there's a range of the ways that, uh, people in the projects relate to you. Like some are a little bit suspicious of like, you know, this bioethicist is just going to tell us no all the time.
I think I, I mean, there definitely are things people shouldn't do, but those are rarely the kinds of things that a major NIH-funded project is involved with. Instead, it's really a question of. How can we reach the goals in the way that is most respectful to people involved in the way that is most likely to result in? More benefits and fewer social harms.
[00:30:18] Rori: So you mostly felt like collaborative with the people with the like, you know, solely science background who are on those projects.
[00:30:27] PILAR: Mostly. I mean, you can be collaborative and sometimes people are not going to be listening to my advice, you know, and I mean, it's one of the things.
Whether, you know, it's in law or bioethics or other areas that I work in sometimes. And I sort of come to it with the attitude that I will give you my best advice. You can take it or leave it, right?
[00:30:50] Rori: As the outside advisor, you can just provide the advice and then they do whatever they want. But when your name is on it, then I assume you would advocate for, you know, positions you feel strongly about.
[00:31:00] PILAR: Absolutely. And I mean, there have been one or two times when I've said, I don't want my name on the paper or I don't need to be on this project. But for the most part, I think, you know, people are collaborative and there are often important leaders on these huge projects who are uh, very thoughtful about ethical issues or who want to be and who welcome the advice.
[00:31:24] Rori: Okay. So as you went deeper into those conversations, you know, hopefully beyond people's first impressions, what were topics that were difficult to build consensus around or that were difficult to come to an agreement around?
[00:31:37] PILAR: There's one that I've worked on a lot, obviously, and I mean, it's still difficult, and it has been difficult.
You know, for ever since I've been in science, which is sort of how you label populations and individuals in terms of race and ethnicity, um, and not just how you label or talk about people or how they talk about themselves, but how that should factor into an analysis or not. And that set of issues is just. It's, first of all, I think it's incredibly complicated and people want a simple answer like, well, we just need a controlled vocabulary for this, or we need some ontology that we can map every study onto. I actually think that that approach is just kind of misguided because there are different reasons why we might. I want to collect information about race and ethnicity. What information you collect depends on the goals of your study depends on who's in your study. There's not one right answer to that set of questions, but people always wish there was. And especially when you're talking about genetics and you're talking about whether you're talking to reference genome sequences or big, you know, variant databases that people might use clinically, right?
They want all these data to be really comparable in terms of race and ethnicity labels. But I think. Even if you make the labels, like you try to map the labels onto some ontology. You could be really fooling yourself about the comparability of the underlying data, right? It's just a really, really complicated topic, and it's a socially incredibly fraught topic.
And it's sort of fraught all the way down, like in the history of genomics, it's obviously race is a very fraught thing. In the world currently, it's a very, very contentious, it leads to all kinds of politically contentious. Conversations, um, among research participants. I'm just part of a study right now.
And, you know, I can't tell you how many hours we spent thinking about when we recruit participants, how are we going to talk about race and ethnicity, and we basically across over a hundred investigators came to some consensus, but now we're recruiting participants and we get feedback from them, like. Okay, in the category of black or African American, you have all these subcategories that people can affirm basically like Afro Caribbean or this or that. But now you're making me feel really bad because I don't know, right? We actually are trying to be as or more concerned with people's experiences of racism and the stressors related to that.
As opposed to like some race label. And so we ask a question which has been asked in many studies about not only how people identify themselves but how they think other people identify them. And it's not uncommon that people will identify themselves one way, but they will know, or they will have had experiences where people clearly identified them some other way.
[00:34:53] Emilia: Do you see ways of moving forward? Make better conversations. What would help?
[00:34:58] PILAR: There is some progress National Academies report that just came out that pertains specifically to genome sciences and I think that report actually hopefully can lead to some progress and having the sort of imprimatur of the National Academies is probably really helpful in this regard.
I don't know. It remains to be seen.
[00:35:19] Rori: I mean, it's, it's an example of major progress and major change and how we think of genetic diversity and race.
[00:35:27] Emilia: Because you're talking about diversity and thinking about diversity without the labels and so on. I looked at some of the titles in the talks that you have given, and there was one that I thought was really interesting because it talked about the way healthcare works in the U. S. A lot of people don't actually have access to healthcare. Yet we are trying to benefit them by including them in research. That's not really going to benefit them because they're never going to have access to healthcare.
[00:36:03] PILAR: We need to be very careful of the idea that, well, people wouldn't benefit if they're not included in the research because that, that presumes that there is some important difference that will be a sustained, continuing difference over time, if we include people in research without gathering the kind of data that allows us to understand why they are or are not responding to something and how the social determinants of health are influencing their response, then we end up just reinforcing these ideas that like different socially defined groups are biologically different and, and.
That's a dangerous kind, you know, it fits into ideologies of white supremacy and other things Number one, I think we need to understand when we argue for inclusion Why we are arguing for it and we need to do it in ways that gather the kind of data that are most likely to Make the outcomes actually helpful.
But the other thing is I think we need to be really careful in sort of selling research participation to, you know, minoritized and marginalized groups of people and this argument that, well, you're just not, you know, you'll be left behind and won't benefit if you don't participate in research now. I mean, I think we see in native and indigenous communities.
A lot of people who will just look at you and say like our community participated in this diabetes research for 40 years and diabetes in our community is now worse than it ever was. Stop telling me that by participating in research I'm going to benefit because clearly not only am I not going to benefit, but my whole community is not benefiting.
But who's benefiting? You are, right? You're getting papers, you're getting grants. And your career is going fine, and we still have diabetes. So that's not to say I think we should just exclude people. Not to say, finally, that I think especially for publicly funded science, I actually think there are really, really important reasons to try and be inclusive in a respectful way.
[00:38:17] Rori: Bilal, what are you excited to focus your attention on next?
[00:38:21] PILAR: I've recently taken on a big project that involves so many new issues, and it's really taking most of my time right now, but, you know, historically I have worked on, uh, mostly on ethics and law of emerging technologies, but I'm now deeply involved in this project that is basically a child development study, a nationwide longitudinal child development study.
It's basically recruiting 7,500 pregnant persons and then following them and their later-born children through to the children's 10th year. But a quarter of the participants will be people who are using controlled substances during pregnancy. Understandably, that raises a vast number of ethical and legal questions.
And so I have spent probably 70 percent of my time, like, getting up to speed on ethics of research involving substance use, ethics of research, uh, with pregnant persons, ethics and law. I should say the law component is actually a huge component of this study.
[00:39:25] Rori: I love how you're, you're just like going into new areas.
You've, I mean, you have all this expertise, all this accumulated expertise, and now you're bringing that elsewhere. I think that's so cool.
[00:39:36] PILAR: Well, keeps life interesting, right? And it makes it so that you never feel like I never feel bored.
[00:39:46] Rori: Thank you for listening to this episode. If you liked what you heard, share it with someone.
[00:39:50] Emilia: You can also support this program by writing a kind review if your listening platform allows it.
[00:39:54] Rori: This episode was produced and edited by Maribel Quezada Smith, with sound engineering and mixing by Kegan Stromberg.
Special thanks to Dr. Pilar Ossorio. The hosts of ScienceWise are Drs. Emilio Huerta Sanchez and me, Rori Rolfhs.
Listener discretion is advised.
[00:00:08] Emilia: You're listening to ScienceWise, the podcast designed to inspire people embarking on a career in science through conversations that will feel like talking to your wisest auntie.
[00:00:18] Rori: Who just so happens to be a badass scientist. I'm Rori.
[00:00:21] Emilia: And I'm Emilia.
If you're new to the show, we're two scientists on a mission to make the world of science more welcoming and amplify the contributions of women.
[00:00:30] Rori: If you want to learn more about who we are, you can check out our first episode of ScienceWise.
[00:00:35] Emilia: Today, we're delighted to introduce Dr. Pilar Ossorio, who is a supremely accomplished scholar working at the intersection of human genetics, law, and bioethics. She's currently a professor of law at the University of Wisconsin-Madison and an elected fellow of the American Association for the Advancement of Science.
Unlike most legal scholars, Dr. Rosario did a PhD in microbiology and immunology. She hails from rural Colorado and successfully navigated academic science and law, including confronting misogyny and creating systematic change. Today, we're going to hear about how she made it through those systems to develop a strong voice, providing bioethical guidance for national human research projects like the 1000 Genomes Project and the Microbiome Project.
Pilar, I am so happy to see you again and to hear your voice. Before the pandemic, I used to always look forward to SING, which is the Summer Institute in indigenous genomics. You and I, you both used to go as instructors. And one of my favorite things to do was to make you come to a dinner with me because you like really good food, and you're really fun to be around. I miss that.
[00:01:54] PILAR: I also remember those dinners very fondly.
[00:01:58] Emilia: I hope we can do that next year. Hopefully. So we want to know a little bit about your upbringing. Where did you grow up? What was your childhood like? Tell us.
[00:02:11] PILAR: Uh, my father's parents immigrated here from Mexico when he was a teeny tiny baby. Um, and he grew up in South Central Los Angeles.
He didn't really speak English until he was in high school. I grew up in Colorado, north of Boulder. My dad was a professor. I believe he was the first Spanish-speaking professor who was hired to teach something other than Spanish. He was hired into the psychology department and also taught in some other departments as well, including in philosophy and mathematics.
And then my mom was a grad student and ultimately also an adjunct professor at the University of Colorado, so I did come from a very academic family. Grew up, um, in a very rural community, though. Not only were we the only family who, uh, was. Not considered white. We were one of only two families who did not attend the same church, which I believe was a Lutheran church.
[00:03:13] Rori: Oh, wow.
[00:03:15] PILAR: And, uh, I actually went to elementary school in a two-room schoolhouse, where one room was first, second, and third, and the other room was fourth, fifth, and sixth. And we had music classes in the boiler room.
Yeah, and it turns out that there are some real advantages to going into a school like that. Um, there are, of course, many disadvantages in terms of lack of resources. Um, but if you're in a class of 1st, and you're working ahead of grade level, if you're in 1st grade, you can easily work on 2nd or 3rd grade work because you're all in one classroom together, right?
It was actually for, you know. A public school education. Uh, it was a fabulous education. I have to say, and I think that kind of take responsibility for your own learning. Um. Stood me in good stead when I got into undergraduate and especially into graduate school, you know, where I had already developed blaming like when I was in high school biology class.
You know, if we had questions that our teacher couldn't answer, then he said, Okay, you know, find some people at the university who work on this area, and I'll call them up and help you arrange to, like, have a meeting with them to explore this topic further, right? Like this idea that you were just going to be proactive about learning things was very much built into that education.
And so I think it, you know, when, once you get into graduate school in particular, I
think,
[00:04:50] Emilia: Yeah, I mean, that's one of the things that grad students have to learn. You mentioned that your dad is Mexican American. What about your mom?
[00:04:58] PILAR: So my mom is Russian and German Jewish immigrants. That's her family background, but her family basically all went from Europe to Latin America before World War II.
[00:05:15] Emilia: So what was your household like? Was there, were there Jewish traditions and Mexican traditions?
[00:05:20] PILAR: So very interestingly, there was my mother in particular, she definitely wanted us to know my father's family traditions. So she spent a lot of time with his mother, like, you know, really learning how to cook the way his family had always cooked.
Right. And not just the way her family had cooked and things like that. But she also would like to bring other students from India who she knew from graduate school to the house to teach us about Indian traditions and to celebrate Indian traditions from India. Like she was very ecumenical, just liked to celebrate things, basically.
Um, so, so we kind of celebrated a lot of traditions and, um, I, I think in some ways, and especially religiously, I think my parents definitely tried to downplay any particular religious connection as being like, this is a connection that you particularly own. So we didn't, like, we weren't bar mitzvah or bat mitzvah.
We never went to any church. We're perhaps more engaged with the traditions of the clearly, deeply rooted Mexican side of our family. And in part, that was my mother's set of choices to keep us connected to my dad's family. So, yeah. And there was also a whole thing about language. Because, you know, my father My father had a pretty strong accent, and he went to college at a time when, um, being Mexican American was not, um, you know, diversity was not celebrated, let's just put it that way.
And his professors would, like, humiliate him in front of the entire class for speaking with an accent. And so he was bound and determined that his kids were not going to speak English with an accent. And my mom really wanted us to speak Spanish, uh, but my dad wouldn't speak it in the house. And so they compromised, and the compromise was that we should learn to at least read and
write it.
[00:07:35] Rori: So you had grown up in like rural Colorado, and then you landed in Palo Alto. Why did you choose to go to Stanford?
[00:07:42] PILAR: I applied to a lot of schools. Um, I went to a lot of universities and was accepted to all of them
[00:07:49] Rori: .Dang,
[00:07:50] PILAR: We didn't have the money for me to go visit colleges. And so I was making the decision based on, you know, sort of, and this was pre internet days.
So it wasn't like I saw a bunch of photos of any of these places, and I had never been to any, I had never been to the East Coast. I had, I had been around a lot of states in the West, though, so maybe that, you know, influenced me a little bit. I mean, I had been to California, um, and I had certainly not been to Massachusetts, um, But I thought both Harvard and Michigan had like really arrogant sort of attitude that they, you know, like they would send these letters like, well, we can't tell you that you've been accepted until the acceptance deadline, but you know, just hold open the possibility that you'll be coming here and don't say yes to anybody else until you get our letter.
And I'd be like, Oh, come on, that's just sleazy. I just didn't like the tone of a lot of their materials. Whereas Stanford was sort of like, they send you this acceptance letter that says, you know, don't think you're so special because you got in here because there were lots and lots of really qualified people.
And the fact that you happened to get in was kind of an accident of how we have to compose the class and stuff.
[00:09:04] Rori: Whoa.
[00:09:05] PILAR: Yeah, the Stanford band also helped. They came to play at a preseason game in Colorado at the University of Colorado. And I don't know if you guys know anything about the Stanford band, but it's like the anti marching band.
So in fact, they wear these like really goofy sort of clothes. They don't wear, like, they look more like a, uh, I don't know, like a Um. Old time, maybe a sort of jazz band or something. Anyway, they don't march. They all kind of like run out into the field like a mob, and then they make these formations that are very.
Untraditional Let's just say and they also don't play traditional marching band music. They played kind of pop and rock and occasionally obscene. And. I was just like, okay, this is the school for me, right? It's like this, I just, it just seemed more consistent with my personality.
[00:10:09] Rori: Wow, it's interesting to imagine like Pilar at 18 who had really taken charge of your own education and then you see these, this kind of like wacky band where people are doing their own thing.
You're like, that's the one. . Those are my people.
[00:10:30] PILAR: I knew that they had huge graduate programs and that the research enterprise was just such a huge focus of this school that I saw. You know, if I want to work in a lab, which I knew that I did as an undergraduate, I would have lots of opportunities.
[00:10:46] Rori: But you, you kind of went from Stanford undergrad to being a PhD student there too. Why did you decide to stay at Stanford?
[00:10:54] PILAR: By the time I got done with undergraduate and was applying to grad schools, I still didn't have any money. Um, and so at that point, I was really clear that I was only going to go to grad school someplace where I could actually visit.
I had a strong belief that you have to find somebody who you feel like you'll be comfortable working with that person and being mentored by that person and spending hours and hours and hours of your life in that person's lab. And in the end, I narrowed down my choices to John Boothroyd's lab at Stanford and Elizabeth Blackburn's lab at Berkeley.
So John was a brand new professor and, uh, Dr. Blackburn was already getting pretty famous. And so she couldn't, you know, like she was really supportive and helpful, but said, I can't guarantee that there would be a space in my lab by the time you get done doing rotations. Whereas John was just starting his lab and he could really guarantee that he would have space in his lab for me.
So that's what made my decision. At the time I entered graduate school, I was the only quote unquote underrepresented minority person in the biological sciences graduate programs at Stanford for the first like maybe couple of years that I was there.
[00:12:13] Rori: In all the biological sciences?
[00:12:15] PILAR: In all the biological sciences.
There were definitely others in, in the medical school. But other than that, all of the minoritized students, grad students were in like the humanities or the social sciences. And I don't know if there were any in like physics or anything like that, but in the biological sciences, I was the only one for a couple of years.
[00:12:38] Rori: Wow. When did you start your PhD?
[00:12:39] PILAR: In 1984.
[00:12:41] Rori: Okay.
[00:12:42] PILAR: And so I used to get a phone call from like. Some provost, like every quarter because Stanford was on the quarter system, you know, just get this random phone call. Like, so how's it going? How are your classes going? You know, it wasn't, it was like a year, a year and a half before I realized that. Every graduate school student didn't get that phone call.
[00:13:07] Rori: Wow.
[00:13:08] PILAR: And I'm sure they were checking up on me just to make sure that I wasn't completely flailing because I was the only one.
[00:13:17] Rori: Wow.
Wow. And that's the way they did it, too. They were like, we'll give you a personal phone call from a provost.
[00:13:24] PILAR: Yeah, exactly.
[00:13:25] Rori: This is going to do the job.
[00:13:26] PILAR: Yeah, yeah, yeah. Now, that said, uh, my advisor. John Boothray was, um, uh, he was phenomenal in every way I could possibly think of. I mean, intellectually and scientifically, but also really as an ally and support. So I was always kind of the little bit of the activist and, and he was actually also pretty patient with the fact that I spent time with different, you know, The rape education prevention group on campus and different like feminist groups on campus and And he was supportive of those kinds of activities and didn't complain about it taking time away from my lab work or anything like that and when I would you know when I would bring up issues about how things were going in the lab or You know, the fact that the St.
Polly girl's boobs were in my face every day because somebody was plastering those calendars all over the lab. You know, he would listen to me and take me seriously and he was just, he was a really great mentor. You can never predict those kinds of things. You can do your best to try and figure out who is going to be a good fit for you.
But he was new, it wasn't like I could talk to other grad students who had been through his lab before, right? And kind of get the, get the scoop that way. It was kind of an instinctive decision that I made, but I have to say, like, one of the things I did, I knew I wanted to, you know, be on a faculty. So, I got on the appointments committee for the department as the graduate student representative.
And the two years I was there, we hired the first woman scientist into our department.
[00:15:11] Rori: Oh my God.
[00:15:12] Emilia: Who was that?
[00:15:12] PILAR: Her name is Cluster. He hauled out and she's she had grown up and done college in India and then grad school school and postdoc in the U. S. as another small brown woman. People everywhere always confuse us for each other.
Even though we looked. Not particularly like at all. Um, but we totally went with it. So we used to like pretend we were sisters sometimes, which people also always believed.
[00:15:42] Rori: Wow.
[00:15:42] PILAR: It was completely ridiculous. But I have to say that, you know, it was one of those things where as supportive as John was, um, and still is for that matter.
Having a woman of color in the department as a faculty member and someone who had dealt with some of the things that I might have dealt with or, you know, could anticipate dealing with or had dealt with was just super helpful after we hired her. I kind of glommed on to her in some ways because It was really nice having her around.
[00:16:16] Rori: Yeah. I mean, you're talking about dealing with some kind of inherent misogyny and racism that's just in the water with these kinds of sexy sexist calendars being put up with like whatever people are making all kinds of comments and assumptions. And it sounds like you really. How did you feel like it helped to solve some of that by being on the appointments committee and impacting who was hired there?
And then, and it worked. You're like, Thank God she was there.
[00:16:47] PILAR: Um, you know, I don't know that I can take too much credit for Cass's hiring, although I will say that, um, I did spend a lot of time with her when she was interviewed. And there was a point when one of the senior faculty. Said some things in the interview to her one on one that outraged her so much that I was driving her back to her hotel and she's like.
I might have to sue him. Oh my God, not only is she not going to come to our faculty, she's going to end up suing us.
[00:17:23] Rori: Oh my God,
[00:17:24] PILAR: I was like, oh my God, when she came out of that interview and she's like. He was asking me all these things about what was I gonna do when I got pregnant as though for sure I'm gonna get pregnant and yadda yadda yadda.
She was so mad.
[00:17:39] Rori: I mean, as she should be. I'm glad she had you to talk to.
[00:17:42] PILAR: Exactly, and it was it was like one of those moments when I thought okay, like I really want her to come here and you know and Um, and. As sometimes happens like, Okay, this is a super famous, well known scientists who we all know is a sexist jerk.
And I basically said that and I said, you know, you know, but it's just like he's not actually a jerk. He just doesn't know better. And here is how, like. The women in the lab handle him when he asked them to type his stuff for the Oh, and then they just say. No, and go find someone else to do that for you.
[00:18:25] Rori: Yeah.
Um, you had the real talk right there. Is there anything that you have particularly fond memories of in your time as a practicing bench scientist?
[00:18:36] PILAR: There were a couple of times when I developed an autorad and looked at it and that. This is like the coolest thing in the world because I am seeing something about the world that no one ever saw before.
And that, that's pretty amazing. I feel like probably I did contribute to the atmosphere in our department, really improving a lot for women in particular.
[00:19:05] Rori: I'm going to ask you about that. What did you do? You mentioned that you were like a little activist in, uh, graduate school.
[00:19:11] PILAR: Oh, various ones. So and this also I will credit, uh, the, the person who was chair of the department when I was there too, which was Stan Falco.
And I rotated through Stan's lab. So Stan had a grad student. Who shall go unnamed because he's now a famous scientist, um, very highly regarded, but at the time was rather immature young man who was just, Oh my God, he would photocopy his genitals and put the photocopy on the inside of like, you know, some, cabinet that everybody opens. Right.
[00:19:49] Rori: Really?
[00:19:50] PILAR: Yeah. Or he would take the sheep's blood. This was one of his tricks that he did one time. Take the sheep's blood that we used to make blood agar plates. Dip a bunch of tampons in the sheep's blood so they had a bunch of blood agar tampons. This is a very intricate stuff. So that somebody walked around a corner and smacked face-first into a mobile of bloody tampons.
[00:20:19] Rori: Jesus Christ.
[00:20:21] Emilia: This is very intricate stuff.
[00:20:23] Rori: Yeah, this is like thought through.
[00:20:24] PILAR: This guy spent way too much time on these, like really weird, you know, sort of juvenile. Inappropriate, unprofessional and sometimes very misogynistic kinds of things.
[00:20:40] Rori: Yeah.
[00:20:40] PILAR: So I just got right up in his face. And then I went to Stan because we were in Stan's lab and I said, look, you know, this is not okay.
And I feel like I can make him stop. But if he doesn't stop, will you back me up? And Stan said, yes. And so basically got. A lot of that behavior changed.
[00:21:01] Rori: What did you tell him? You just told him, like, cut this the fuck out?
[00:21:05] PILAR: Yeah, I was like, You need to take down all of this crap that you've been putting around the lab and this, this, and this and, you know, come on, get over the whole bloody tampon thing because he did bloody tampons a couple times.
I'm like, really? This is really not fair to the women in the lab and to all the rest of us who have to put up with this BS and so, you know, you need to stop and like I just did recruit some other people also to the cause of actually confronting this behavior and not just letting it go on.
[00:21:36] Rori: So you like directly confronted him and you kind of like grew a little community of people who could do it together.
[00:21:42] PILAR: Yeah. But then one of the really bad ones was that there was this professor who was collaborating with the lab that I was rotating in. And this guy. was just disgusting, and he would call, so he was collaborating with the postdoc I was working with, and when he would call, and I would answer the phone, the guy would, like, start talking about how, you have such a sexy voice, Pilar.
Why don't you come over to my office and we can talk some more.
[00:22:12] Rori: Oh, that's so gross.
[00:22:13] PILAR: Just gross. I would keep trying to redirect him back to the science, and he would keep going right back to total sexual harassment. And I do not know if he treated anybody else that way, but I assumed that he had, but nobody in the lab, the other, the postdoc, and the previous grad student were both men.
And so I told the postdoc, I was like, you know, this is not okay. And I should not have to be like, even talking to this guy because he won't even have a conversation with me about the work. It's all about how sexy I am and how sexy my voice is and yada, yada, yada. No woman should have to deal with this, and I went and banned from the department.
[00:22:53] Rori: Yeah.
[00:22:54] PILAR: And so I went to Stan and I said, Stan, I don't think I should have to put up with this. So, as long as I'm here, I don't think he should be able to come. I don't think he should be able to come into the lab. I don't think he should be able to come onto our floor because the guy will not leave me alone.
And Stan said, okay.
[00:23:10] Rori: Dang.
[00:23:12] PILAR: The guy came to me with the postdoc, and I'm like. You and I need to have a conversation. Let's go into the break room. And I just read to do the right act. Oh my God, I was so mad at him. And I had like written out for myself and practiced what I was gonna say. Just read the right act.
And I'm like, and you can check with Stan, but for now you are banned from our department.
[00:23:39] Rori: Wow.
Wow. But that worked. You just like, asserted a really strong boundary, got back up from the person with political power and then like. Boom.
[00:23:53] PILAR: Totally. Totally. And I was like, thank God, I'm like, I don't have to talk to this guy.
[00:23:59] Rori: That's so impressive, though.
[00:24:00] Emilia: I know. I don't think I would be able to do that, like when I was a grad student. So that's pretty impressive.
[00:24:06] PILAR: You know, I've thought about this, like I was more inclined to do it then than I even am now, mostly because now nobody that I've come into contact with in the last, say, 10 to 15 years behaves anything like that anymore.
I mean, there is. Still plenty of sexism and racism as a senior colleague of mine once said Pilar pick your back And this is a person who was an african american first in all kinds of ways and that battle in particular With that guy was totally worth fighting because he was just such such a lazy creep.
[00:24:39] Emilia: I'm glad that the chair of the department had had your back as well.
[00:24:42] PILAR: I was incredibly fortunate in that right that John always had my back.
[00:24:49] Rori: I mean, it's fortunate, and it's also like, as it should be. Like, of course you should have. What would he say? No, we're going to invite this guy in. No.
[00:24:56] Emilia: I mean, because otherwise, yeah, they make you feel like you're the crazy one.
You are a scientist, you have all this training, and you did a PhD, a postdoc, but then you went to law school. So what happened, Pilar?
[00:25:12] PILAR: From high school, I'd been really interested in sort of the way that science, um, goes out into society. And And And And And And And I was kind of thinking about the fact that like, what if I did the most brilliant science in the world and did something that could be, you know, some cure for some really important disease, but no one could get it because of various policy decisions.
So I had all along been thinking about those kinds of questions. And actually. Stan Falco, in a completely just passing comment, one night late in the lab, he and I were talking about like, what are people's motivations for doing science? And, and he said, you know, most of us who really make a career out of bench scientists, it's, it's about like, we're very curiosity driven and a little bit obsessive about some scientific questions, because if we really wanted to help people, We'd be cloning toilets, not genes.
And his point, of course, was that it's not sophisticated molecular biology that has the most overall impact on human health. It's basic public health interventions like good sanitation that over time have actually probably made the most difference and not sophisticated. Drugs and things like that, but it was something that always stuck in my mind that you could be a really great scientist, but if you wanted to have an impact in the world, like the science itself was not enough while I was a postdoc and in the lab, I just started going to like every bioethics talk at Yale that I could find and yell had to like super famous bioethicists at the time when the law school when the med school and there were lots of talks in bioethics.
Um, I just started reading bioethics. I applied for a AAA, a short course in bioethics, and did that. And then, I just basically wrote a paper and submitted it. And it got accepted.
[00:27:14] Rori: Wait, were you, were you a postdoc when you did that?
[00:27:17] PILAR: Yeah, I was a postdoc. Elsie had just started. Right? So ethical, legal, and social implications of the Human Genome Project.
So the Human Genome Project started in the early 90s and with funding from Congress that required that they have an ethics component. And they wanted somebody to be part of the first grant reviews for the ELSI grants that somebody with scientific training. And apparently they couldn't find a more senior scientist to sit around and read a bunch of grants in, you know, philosophy and sociology.
So they asked me and I said yes. And so I was the scientist or ultimately one of two scientists on maybe the first LC grant review committee. And so I got to know a lot of people in the field. And then I got invited to be on President Clinton's Health Care Reform Task Force as one of the three youngest people on that task force. to be part of the bioethics working group.
[00:28:19] Emilia: So you mentioned that you were part of the task force, which there you had the opportunity to meet other people working in law and bio, bioethics. So what drew you to bioethics?
[00:28:30] PILAR: It just, the questions were always really interesting to me. And actually one of the things I like about both legal scholarship and bioethical scholarship is that you can take theory, then you apply theory in this really.
Practical set of problems, and I feel like in some ways the best bioethics does that too.
[00:28:50] Rori: You've been like, uh, you know, an instrumental participant in the discussions that were involved in like some of the super high-level human genetic data kind of projects that have happened in the last decades, like thousand genomes.
How was it to work on these sometimes complicated projects as somebody with this highly interdisciplinary background?
[00:29:13] PILAR: I, I mean, that's such a complicated question. Usuall,y it was incredibly interesting. Um, and I think for me, like, actually, one of the dangers is that I get sucked into science and forget to be an emcee, right?
And so I have to kind of discipline myself to make sure that what I'm bringing to the table is what the project needs me to bring to the table. There are, there's a range of the ways that, uh, people in the projects relate to you. Like some are a little bit suspicious of like, you know, this bioethicist is just going to tell us no all the time.
I think I, I mean, there definitely are things people shouldn't do, but those are rarely the kinds of things that a major NIH-funded project is involved with. Instead, it's really a question of. How can we reach the goals in the way that is most respectful to people involved in the way that is most likely to result in? More benefits and fewer social harms.
[00:30:18] Rori: So you mostly felt like collaborative with the people with the like, you know, solely science background who are on those projects.
[00:30:27] PILAR: Mostly. I mean, you can be collaborative and sometimes people are not going to be listening to my advice, you know, and I mean, it's one of the things.
Whether, you know, it's in law or bioethics or other areas that I work in sometimes. And I sort of come to it with the attitude that I will give you my best advice. You can take it or leave it, right?
[00:30:50] Rori: As the outside advisor, you can just provide the advice and then they do whatever they want. But when your name is on it, then I assume you would advocate for, you know, positions you feel strongly about.
[00:31:00] PILAR: Absolutely. And I mean, there have been one or two times when I've said, I don't want my name on the paper or I don't need to be on this project. But for the most part, I think, you know, people are collaborative and there are often important leaders on these huge projects who are uh, very thoughtful about ethical issues or who want to be and who welcome the advice.
[00:31:24] Rori: Okay. So as you went deeper into those conversations, you know, hopefully beyond people's first impressions, what were topics that were difficult to build consensus around or that were difficult to come to an agreement around?
[00:31:37] PILAR: There's one that I've worked on a lot, obviously, and I mean, it's still difficult, and it has been difficult.
You know, for ever since I've been in science, which is sort of how you label populations and individuals in terms of race and ethnicity, um, and not just how you label or talk about people or how they talk about themselves, but how that should factor into an analysis or not. And that set of issues is just. It's, first of all, I think it's incredibly complicated and people want a simple answer like, well, we just need a controlled vocabulary for this, or we need some ontology that we can map every study onto. I actually think that that approach is just kind of misguided because there are different reasons why we might. I want to collect information about race and ethnicity. What information you collect depends on the goals of your study depends on who's in your study. There's not one right answer to that set of questions, but people always wish there was. And especially when you're talking about genetics and you're talking about whether you're talking to reference genome sequences or big, you know, variant databases that people might use clinically, right?
They want all these data to be really comparable in terms of race and ethnicity labels. But I think. Even if you make the labels, like you try to map the labels onto some ontology. You could be really fooling yourself about the comparability of the underlying data, right? It's just a really, really complicated topic, and it's a socially incredibly fraught topic.
And it's sort of fraught all the way down, like in the history of genomics, it's obviously race is a very fraught thing. In the world currently, it's a very, very contentious, it leads to all kinds of politically contentious. Conversations, um, among research participants. I'm just part of a study right now.
And, you know, I can't tell you how many hours we spent thinking about when we recruit participants, how are we going to talk about race and ethnicity, and we basically across over a hundred investigators came to some consensus, but now we're recruiting participants and we get feedback from them, like. Okay, in the category of black or African American, you have all these subcategories that people can affirm basically like Afro Caribbean or this or that. But now you're making me feel really bad because I don't know, right? We actually are trying to be as or more concerned with people's experiences of racism and the stressors related to that.
As opposed to like some race label. And so we ask a question which has been asked in many studies about not only how people identify themselves but how they think other people identify them. And it's not uncommon that people will identify themselves one way, but they will know, or they will have had experiences where people clearly identified them some other way.
[00:34:53] Emilia: Do you see ways of moving forward? Make better conversations. What would help?
[00:34:58] PILAR: There is some progress National Academies report that just came out that pertains specifically to genome sciences and I think that report actually hopefully can lead to some progress and having the sort of imprimatur of the National Academies is probably really helpful in this regard.
I don't know. It remains to be seen.
[00:35:19] Rori: I mean, it's, it's an example of major progress and major change and how we think of genetic diversity and race.
[00:35:27] Emilia: Because you're talking about diversity and thinking about diversity without the labels and so on. I looked at some of the titles in the talks that you have given, and there was one that I thought was really interesting because it talked about the way healthcare works in the U. S. A lot of people don't actually have access to healthcare. Yet we are trying to benefit them by including them in research. That's not really going to benefit them because they're never going to have access to healthcare.
[00:36:03] PILAR: We need to be very careful of the idea that, well, people wouldn't benefit if they're not included in the research because that, that presumes that there is some important difference that will be a sustained, continuing difference over time, if we include people in research without gathering the kind of data that allows us to understand why they are or are not responding to something and how the social determinants of health are influencing their response, then we end up just reinforcing these ideas that like different socially defined groups are biologically different and, and.
That's a dangerous kind, you know, it fits into ideologies of white supremacy and other things Number one, I think we need to understand when we argue for inclusion Why we are arguing for it and we need to do it in ways that gather the kind of data that are most likely to Make the outcomes actually helpful.
But the other thing is I think we need to be really careful in sort of selling research participation to, you know, minoritized and marginalized groups of people and this argument that, well, you're just not, you know, you'll be left behind and won't benefit if you don't participate in research now. I mean, I think we see in native and indigenous communities.
A lot of people who will just look at you and say like our community participated in this diabetes research for 40 years and diabetes in our community is now worse than it ever was. Stop telling me that by participating in research I'm going to benefit because clearly not only am I not going to benefit, but my whole community is not benefiting.
But who's benefiting? You are, right? You're getting papers, you're getting grants. And your career is going fine, and we still have diabetes. So that's not to say I think we should just exclude people. Not to say, finally, that I think especially for publicly funded science, I actually think there are really, really important reasons to try and be inclusive in a respectful way.
[00:38:17] Rori: Bilal, what are you excited to focus your attention on next?
[00:38:21] PILAR: I've recently taken on a big project that involves so many new issues, and it's really taking most of my time right now, but, you know, historically I have worked on, uh, mostly on ethics and law of emerging technologies, but I'm now deeply involved in this project that is basically a child development study, a nationwide longitudinal child development study.
It's basically recruiting 7,500 pregnant persons and then following them and their later-born children through to the children's 10th year. But a quarter of the participants will be people who are using controlled substances during pregnancy. Understandably, that raises a vast number of ethical and legal questions.
And so I have spent probably 70 percent of my time, like, getting up to speed on ethics of research involving substance use, ethics of research, uh, with pregnant persons, ethics and law. I should say the law component is actually a huge component of this study.
[00:39:25] Rori: I love how you're, you're just like going into new areas.
You've, I mean, you have all this expertise, all this accumulated expertise, and now you're bringing that elsewhere. I think that's so cool.
[00:39:36] PILAR: Well, keeps life interesting, right? And it makes it so that you never feel like I never feel bored.
[00:39:46] Rori: Thank you for listening to this episode. If you liked what you heard, share it with someone.
[00:39:50] Emilia: You can also support this program by writing a kind review if your listening platform allows it.
[00:39:54] Rori: This episode was produced and edited by Maribel Quezada Smith, with sound engineering and mixing by Kegan Stromberg.
Special thanks to Dr. Pilar Ossorio. The hosts of ScienceWise are Drs. Emilio Huerta Sanchez and me, Rori Rolfhs.