On Saturday, June 1st at 7PM, Boston University Professor Ruha Benjamin discussed her new book, People’s Science: Bodies and Rights on the Stem Cell Frontier at the Brookline Booksmith, 279 Harvard Street.
Brookline Hub: Quick, give me an elevator statement for your new book, People’s Science. Who should read this book and why?
Ruha Benjamin: People’s Science is about the social impact and meaning of stem cell research for different groups—like how women’s health is affected by donating eggs for research, whether poor people will benefit from expensive therapies, and concerns about African Americans being treated like medical guinea pigs. In a nutshell, I unpack the tension between scientific innovation and social equality and argue that we shouldn’t sacrifice equity at the altar of scientific expedience. People’s Science is for everyone who cares about the future of health care. And it’s for anyone who thinks we should hold our democracy to a higher standard.
BH: What motivated you to write this book?
RB: It was an interview with a young woman some 12-13 yrs ago, before I even knew about regenerative medicine and stem cell research. I was researching women’s reproductive health in Atlanta, and I interviewed a college student who had become pregnant as a teenager. When she went in to labor, for one reason or another the doctor decided a cesarean section was necessary. She explained to me how she was laying on the operating table in a semi-conscious state, with her mother on one side and the doctor on the other. Right after the delivery the doctor turned to the mother and said, “While I have her open, do you want me to just tie her up?” He was asking permission to sterilize the young woman. This was in the 1990s and the patient was African American. Her mom ultimately consented to the procedure.
This is when it really clicked for me—how a single medical intervention can mean such different things depending on one’s social position. For some, a tubal ligation to prevent future pregnancies presents a welcome reproductive choice, but for others it’s a coercive, eugenic denial of one’s social worth. It was at this moment that I became committed to telling the stories of those people who are on the table, but who are often excluded from sitting at the table when scientific and medical decisions are made.
So fast forward about five years, and I found myself living in California at a time when voters approved a $3 billion investment in stem cell research following the Bush administration’s federal restrictions. I was eager to learn who would be included and excluded from this unprecedented investment in a new and promising field—and how precisely public participation would be enacted. And I wanted to examine these issues from the inside out, so I gained a formal affiliation with the new state stem cell agency. And after seven years of research and writing, People’s Science is the culmination of what I found when I peeled back the slick packaging of a quasi-populist scientific initiative.
BH: What do you think the net result will be of Obama’s affordable healthcare act on medical innovation and/or access to benefits for all patients, regardless of their socioeconomic background?
RB: Right now approximately 50 million people lack heath insurance and the Affordable Care Act will bring that down to about 20 million people. This doesn’t include all the people who have insurance now but are likely to lose coverage if they lose their jobs—future beneficiaries of ACA as it were. So, ultimately, this legislation is an important step towards creating a humane society—one in which preexisting conditions, exorbitant costs, and unemployment can’t prevent people from receiving the care they need.
That said, having health insurance isn’t the end all be all. Not only are many people “over-treated”—for example, the cesarean section rate among low risk patients in the United States is alarming. There are also many who experience inferior medical treatment for reasons other than a lack of insurance. For example, in the book I describe one young woman with sickle cell disease who sat in an emergency room for over 8 hours with crippling pain watching as people with scrapes and bruises were seen before her. The staff, in this case, didn’t appreciate the severity of her pain because it was invisible. This mirrors the experience of many other people who, due to social class, race-ethnicity, or gender and sexuality—may feel like their concerns are invisible to those who are making serious decisions that affect them.
In terms of how this relates to medical innovation, we have a lot of evidence that shows that when we improve our ability to treat illnesses, those who disproportionately benefit are people who are already wealthy, educated, and socially-connected. So investing in cutting edge stem cell treatments may give many people hope, but if we don’t tackle social disparities, then the majority of people are unlikely to benefit from regenerative medicine. After writing People’s Science, I was left wondering why it is that we can believe so earnestly in our body’s ability to one day regenerate with stem cell treatments, but we can’t wrap our heads around the idea of transforming our body politic to become more equitable and just?
BH: You quote a Harvard University professor using the term “Bioconstitutionalism.” What does this term mean and how does it relate to your book?
RB: Simply put, this idea draws attention to the way that social values and legal norms shape the work of life scientists, including stem cell researchers. Society, in other words, creates the conditions in which biology and other life sciences take shape.
It’s easy to imagine science in a bubble. When some controversial discovery is made, like the isolation of human stem cells using embryos in 1998, the bubble bursts! And now we have to deal with the “social impact of science” and you hear people saying things like our laws and policies have to “catch-up” to the science. In this version of the story, society always seems to be “lagging” behind the science. But in reality, there never was a bubble: researchers are a part of society, and everything from what gets funded, to who does the work, to where they do it, and nowadays to who owns the fruits of that research, are all shaped by social norms, economic priorities, and legal structures. With this the case, we need to be more proactive about which social values—like equity and justice—we want to shape science and medicine.
BH: What is the good/bad news regarding the Supreme Court’s decision to allow Myriad Genetics to patent genes linked to Breast Cancer? If patents discourage or wholly eliminate the possibility of new research, won’t we eventually cripple the scientific community’s ability to innovate?
RB: If the Supreme Court upholds Myriad’s patents on BRCA1 and BRCA2, it’ll definitely be bad news for researchers who work on these genetic mutations. Its also bad news for anyone who thinks that humanity’s shared genetic heritage should be free of barcodes. That said, an Institutes of Medicine study found that the impact of gene patents on most other areas of research has been pretty minimal. Scientists, for the most part, aren’t being run out of particular research areas and their work isn’t being slowed down due to the proliferation of patents. Not yet, anyway. That said, I wonder whether fixating on gene patents overshadows all the more mundane ways that public goods have been sold to the highest bidder.
BH: Angelina Jolie recently announced that she had tested positive for the Breast Cancer gene and had undergone a preemptive double mastectomy. Do you think this information will help save lives, or is it another instance of highlighting the inequality problem since many people cannot afford to get tested?
RB: Not only is the genetic test Jolie describes expensive (about $3,300), but the genetic mutation that runs in her family occurs in less than 1 percent of the population. And, not everyone who tests positive for the mutation develops cancer. Its great she’s encouraging women to be proactive. But the vast majority of people who develop breast cancer do so for other reasons. By overemphasizing genetic risk and surgical intervention, we lose sight of the many environmental determinants of cancer that require our urgent attention and collective intervention. The good news is that in recent years breast cancer activists and advocates for environmental justice have joined forces to do just that! It’s easy to overlook this vitally important work when the genetic story of cancer takes center stage.
BH: How long have you lived in Brookline? What do you like best about this town?
RB: I moved to Brookline from Los Angeles three years ago, with my husband and two sons. What I love most about this town are the phenomenal schools and the incredible teachers. I want every single child in every single school system to experience the quality of education these kids experience.
—By Jennifer Campaniolo
