People’s Science: Bodies & Rights on the Stem Cell Frontier
In Plain English:
Sociologist investigates the tensions between the stem cell research community and racial minorities and/or low-income communities
What it covered:
Dr. Ruha Benjamin, a sociologist who studies scientists and the way they interact with marginalized communities, opened her talk with a story about a bench.
Not a lab bench. A park bench. In Berkeley.
It was a nice day, and she had a few minutes to spare after giving a talk at UC-Berkeley, so she decided to try and take a nap on the park bench. She found that she couldn’t. “Tell me why,” she said, clicking to a slide with a picture of a metal park bench with three sets of arm-rest-style dividers.
“…It has bars on it?” one audience member said tentatively.
“Right. But why do you think those bars are there?”
Another audience member spoke up: “To discourage homeless people from sleeping there?”
A few other responses came from around the room: “To give people their own space”, “It looks nice…”, “Maybe structural reasons?”
Dr. Benjamin nodded. “Right. So we can see even in something as simple as a bench, there are ideas about the people who will use it (people who want their own space) and also ideas about people who we don’t want to use it (homeless people).”
And from there, she segued into the science. Our society, Dr. Benjamin argued, is one that consumes a lot of science and technology. Even people who don’t think of themselves as interested in STEM fields consume science in the form of health care and in the technology and infrastructure that we use every day.
However, she pointed out, “the vast majority of us who aren’t trained in any particular science aren’t very involved in the production of science.”
Dr. Benjamin’s research focuses on the “science in a bubble” phenomenon, where science presents itself as being separate from politics and other social concerns. Her most recent book, People’s Science: Bodies & Rights on the Stem Cell Frontier, is the end-product of a year spent working as a post-doctoral fellow at UCLA’s Center for Society and Genetics. [Correction: The book is actually the end product of two years of fieldwork while she was at UC Berkeley and UCLA’s Center for Society and Genetics.]
She was tasked with reaching out to underserved communities and acting as an interface between those communities and the stem cell researchers. However, she noticed that while the researchers expected people of color and people from low-income backgrounds to answer their questions and volunteer as research subjects, they were surprisingly unresponsive to questions coming from those communities. She decided to investigate further and began conducting interviews with both patients and members of the biomedical research community. Her goal to parse out who is included in “the default public” for biomedical applications of stem cell research and who is excluded.
Not surprisingly, the concerns of people of color and people living below the poverty line are often swept under the rug in discussions of biomedical research policy. It should be noted that there are some groups who do try to address these issues, but mainstream science usually tries to distance itself from politics. In doing so, science also tends to distance itself from discussions of social inequality.
Dr. Benjamin told us the story of Dr. Phyllis Preciado, a medial doctor and Latina who was serving on the California Institute for Regenerative Medicine’s ethics board. One of her fellow committee members gave her the nickname “the people’s violin”, because every time the committee discussed possible applications for CIRM’s research, she would start asking questions about how they were going to ensure poor people had access to these benefits.
Dr. Benjamin spoke with both Dr. Preciado and other members of the committee and reported that several of the other doctors on the committee had an “*eye roll* There she goes again…” response to Dr. Preciado’s comments about economic and racial inequality. Eventually, Dr. Preciado grew so frustrated that she resigned from the board.
The next story Dr. Benjamin shared was about a representative of the CIRM who hosted a townhall-style meeting where members of under-served communities could ask questions about Prop. 71, the California constitutional amendment that guaranteed a “right to stem cell research” and established CIRM as a permanent state-funded research institution.
At the town hall meeting, several community members asked questions about the socioeconomic impacts of Prop 71 and whether they would have affordable access to the benefits of stem cell research. The scientist who was speaking on behalf on CIRM said that the text of Prop 71 didn’t delve into the social implications of stem cell research and that since he was a scientist, it wasn’t his job to comment on the possible social impacts. CIRM, he argued, was a small agency and therefore not capable of addressing entrenched social inequalities. When they asked about whether CIRM would investigate diseases that disproportionately affect low-income people, he said that funding was limited, and it would be tough to research everything.
However, when it came time to address the questions about the ethics of taking stem cells from an embryo, he was better prepared. He showed a slide about the Nation Association for the Advancement of Preborn Children (NAAPC), an organization that protests against stem cell research and maintains that personhood begins at the moment of conception. Obviously NAAPC’s name is a play on NAACP (the nation’s oldest civil rights organization) and is drawing a parallel between racial injustice and the perceived injustice against human embryos. Obviously, that name was offensive to a lot of people in the audience at the town hall meeting.
Dr. Benjamin argued that this scientist had successfully “deflected” the responsibility for any possible exclusion. He had acknowledged that their problems were serious and probably did deserve more attention without committing to addressing any of these problems. And he was able to make them distrustful of stem cell research’s political adversaries by pointing out how offensive the NAAPC’s rhetorical strategies were.
Then she finally brought up the idea of “egg-onomics”, the idea that women of color are expected to participate in stem cell research by donating their eggs and tissue samples simply because “science needs them”. Researchers emphasize the need for tissue and egg donors with diverse ethnic backgrounds, because they want to be sure that the therapies they develop will work for people with different genetic variations. In isolation, collecting eggs from women of all ethnicities seems like a perfectly reasonable and commendable goal, but those eggs have to be extracted from women who live in the real world and who are likely to be affected by poverty, lack of education, and institutional racism.
Dr. Benjamin told the story of Shavonne, a woman of color who agreed to donate her eggs to a stem cell research facility. Before eggs can be harvested from a woman’s ovaries, she has to undergo a series of fairly intense hormonal therapies, and sometimes there are side effects. Shavonne has an inquisitive personality, so she asked the technicians who prepared her for the hormone therapy a lot of questions. She told Dr. Benjamin that the technicians seemed terse and reluctant to answer.
A few weeks later, Shavonne noticed that her stomach was swelling, that she “looked like she was at least four months pregnant”. And it kept swelling. At first, she tried to sleep it off, but after a few hours, she was in so much pain that her mother took her to the emergency room. The nurses had to remove seven quarts (1.75 gallons, almost two of the big milk jugs) of fluid from her abdomen(!). They told her that it was severe ovarian hyperstimulation syndrome and that they frequently saw these side effects in women who had donated to IVF clinics.
But because Shavonne had given her eggs to a research clinic that legally wasn’t allowed to provide monetary compensation in exchange for egg donations, she was left to foot a massive hospital bill. She also could have suffered permanent damage to her ovaries.
A lot of feminist activists lobby against providing financial incentives for egg donations that go toward stem cell research, because they argue that paying women makes it harder for them to objectively decide whether the benefits of egg donation are worth risking the side effects. Dr. Benjamin pointed out that this restriction creates a bizarre economic predicament where stem cell research clinics (which are legally barred from compensating donors in many U.S. States) have to compete with in vitro fertilization clinics, which can and do pay their donors.
Dr. Benjamin closed her talk with an informal Q & A session, where she expanded on some of these points and reaffirmed the idea that science needs to stop side-stepping these ethical and social issues. The politicians are clearly not going to address these problems without further prodding, and scientists need to remember that our cultural history shapes our present, even in fields that like to think of themselves as “living in an a-political bubble”.
My Personal Take:
I minored in STS (the history, philosophy, and sociology of science and technology) in college, and I would have majored in it if my college offered STS as a major, so this kind of thing is pretty much my jam. I loved it. I thought that Dr. Benjamin did a great job of asserting that “It’s not okay for scientists to ignore the socio-political context they’re working in” without being anti-science. This was tough love, not an attack.
I really wished that there had been more people there to hear her speak. Dr. Benjamin is a really animated speaker, and she was really present in terms of responding to her audience members’ facial reactions. There were only a couple dozen of us in the room, but the flip side of having a small group was that everybody had plenty of time to ask their questions and respond to Dr. Benjamin’s comments.
I thought her comments about deflection were pretty spot-on. Making anti-science people look like idiots is a lot easier than actually dealing with the way technological innovations exacerbate existing social inequalities, and for a lot of scientists, asserting their intelligence is their default defensive position.
I’ve always kind of felt like the “science in a bubble” image is one that scientists act out because it’s what everybody (including the people who control their funding) expect them to do. Most scientists I know are well aware that their work can impact societal infrastructure and public health, but when you’re applying for a job or a grant, you’re under a lot of pressure to project the image of a “perfect, meticulous, objective scientist”, so in those situations, pretending you live in an objectivity bubble can build up your credibility.
So I asked her if she had taken the performative aspect of the “science bubble” rhetoric into account. I felt a little bit awkward doing so, because it might have sounded like I was trying to justify scientists’ habit of deflecting blame for social problems. (Also I’m like this little white girl with only a liberal arts degree questioning the perspective of a woman of color with a doctorate in sociology, so yeah…)
I agree that scientists’ habit of deflecting responsibility for social issues is a huge problem. I grew up in a town run by physicists, and there were lots of boys in my K-12 classes who drove me crazy by saying things like “English and social studies don’t matter; STEM subjects are the only ones that matter”. Meanwhile, I would be holed up in the school newspaper office rambling about how “They only think that because the culture in this town conditions you to think that math is more important than English!”
Still, I think that any time you’re talking about the responsibilities scientists have toward the rest of the community, you have to acknowledge how bizarre the scientist’s position is in Western society’s power structure is.
Scientists and engineers are responsible for building the machines and developing a lot of the theoretical frameworks that allow the political elites to exert their power; however, the political elites still control the scientists’ funding, so when scientists are developing their research initiatives, they have to design their projects to be appealing to the people who control the money. (And if the people who control the money are the Koch brothers or Suzanne Wright, that can create a huge bias in what kind of research is done.)
Furthermore, the jargon that scientists use to talk to each other is so specialized that the average person would have hard time following the language that people with science Ph.ds use when talking to each other. When scientists talk to the “public”, they’re actually omitting a lot of the cultural context that happens within the scientific community and just giving us a basic, fragmented glimpse into what they’re actually doing. Unfortunately, that fragmented overview is what the political elites use as the basis for funding decisions. (And to be clear, scientists are obviously a privileged group. They’re highly educated, usually white and/or Asian, and generally come from middle and upper-class families. But the average scientist is not what I would consider a political elite, and the average political elite is not what I would consider a scientist. Obviously, there are some exceptions to those generalizations.)
Anyway, Dr. Benjamin’s response to my question was basically “I see what you’re saying. But we still have a serious problem in that scientific institutions don’t see incorporating social scientists who work on the implications of the research as a priority. You have to push them really hard to get them to implement something as basic as an ethics review board.” (I’m paraphrasing.)
But I still think we need to be careful about conflating the public image that scientific institutions like to project with the beliefs of individual scientists. Dr. Benjamin did say that she was expecting to be “lambasted” by angry scientists after her book and an op/ed in The San Francisco Chronicle came out, but much to her surprise, most of the scientists were actually pretty open to this type of critique.
I wasn’t really surprised when she described the scientists’ response. I actually find it a lot easier to make friends with “science-y” type people, precisely because they tend to be more open to questions, to re-evaluating their own opinions, and letting complicated things be complicated. I was very confused when I first got to my very-liberal-artsy college, because people were saying things about scientists wanting to “make things black and white”, but it seemed to me like the humanities majors were way more sensitive about evidence that challenged their preconceived categories and much more likely to interpret a question about “But why did you do it this way?” as an attack. I found that behavior annoying, so I became a biology major.
However, most people don’t grow up in situations where they’re deeply immersed in scientific culture from an early age, so they don’t notice that kind of thing.
Anyway, I really appreciated that I got to be part of this discussion at BU. I could tell that for a lot of the audience members, this was their first time thinking about stem cell research through a sociological lense, and they seemed really engaged and interested in it.
During the Q & A, Dr. Benjamin also told us about her next upcoming project, where she will look at the way developing countries’ governments respond to the genomic research community’s interest in mapping genetic diversity. There are many, many versions of genes that exist in populations in sub-Saharan Africa that simply do not exist in any other human populations. Developing countries’ leaders are realizing that they possess a unique genetic resource, but at the same time, we’re also seeing a rekindling of interest in delineating the biological differences between different races. That could be problematic. So I’m really excited to see what she finds out after investigating that topic in more detail.
…And yeah, I think that people really need to push themselves to learn more about STS issues. The academic STS community tends to focus on kind of remote-seeming history and philosophy, but the ability to consider what impacts a scientific theory or a technological innovation could have on social inequalities is just as important as the ability to read a graph. I think the contextual aspect of being scientifically literate gets overlooked a lot, but I guess the only thing to do about that is to just keep writing…
Biggest Misconception to Avoid:
Stem cell research (and advanced biomedical research in general) isn’t inherently marginalizing. It’s just that the mechanisms of marginalization are deeply entrenched in the scientific institutions. Dr. Benjamin is trying to call attention to the way scientists ignore these entrenched problems.
Dr. Benjamin on getting people from marginalized communities to trust scientists: “I’m not interested in why they don’t trust you; I’m interested in why you think you’re trustworthy…When I started to use that lense, that’s what got me into trouble.”
Best Audience Question:
(There were only a couple dozen of us in the room, so the Q&A portion turned into an informal discussion with everybody making comments & questions.)
Audience member: In this country we tend to worship science. For some states, not supporting stem cell research may be a way to push back.
Dr. Benjamin: Yeah. Opting out of science in K-12 is also a way of pushing back. It’s certainly a way of asserting your own values.
Another audience member: But opting-out is a blunt instrument. You’re pushing away from these people instead of talking to them.
Yet another audience member: Yeah, I didn’t realize it until you put those two slides up (Dr. Benjamin was showing us a slide with two side-by-side Time covers. One was about the promise of technology with a picture of an idealized human head being plugged in. The other was a photo of a pill with a headline that read “Bitter Pill”. The bitter pill cover was a reference to rising healthcare costs.). Prop 71 is the science “uh-huh” response. Prop 72 is “money out of my pocket to help now?! Nuh-uh”
- Marginalization = When certain groups do not get a say because of the way mainstream society conducts itself. Usually refers to systemic problems rather than individual instances where one person silences another. Racial minorities and poor people are often marginalized.
- Inclusion/Exclusion = whether a population has a say in the dialogues and decision-making processes that affect the people in said population. Populations that have a say are included; populations that are marginalized are excluded.
- Deflection = part of Affect Control Theory, which says that people often interpret events and data in ways that confirm their preconceived notions. Deflection is a specific way of doing this, where the person who is thinking/speaking prevents themselves from thinking about the evidence that doesn’t fit their bias by focusing on something that really, really confirms their bias.
- “Right to conduct stem cell research” = a very weird phrase that is part of Prop 71 and is now written into California’s constitution. Explicitly includes pluripotent stem cells, and at the time when Prop. 71 was written, it was very hard to obtain pluripotent stem cells without taking them out of an embryo.
- Ovarian Hyperstimulation Syndrome (OHSS) = when ovaries are exposed to high levels of certain hormones and freak out. A side effect of the egg-retrieval drug regiment.
Tl;dr: Stem cell researchers are kind of bad at taking economic and social inequalities into account when they think about applications for their research. So are politicians. This is a problem.