Is my DNA my property? Feminist science studies scholar weighs in
Faculty of Arts and Social Sciences Research Spotlight:
Dr. Coleman Nye&苍产蝉辫;鈥�&苍产蝉辫;Gender, Sexuality, & Women鈥檚 Studies
In a landmark case on genetic testing, the U.S. Supreme Court ruled that . The case of Association for Molecular Pathology v. Myriad Genetics (2013) challenged a patent held by biotech company Myriad on tests for genes that increase the risk of breast and ovarian cancer. Despite protests from the scientific community, Myriad used legal avenues to prevent medical researchers from conducting cancer research. Although its claim to the patent ultimately did not hold up in court, how did Myriad come to insist that biological matter could be patented in the first place?
丁香园AV Faculty of Arts and Social Sciences professor Coleman Nye suggests that feminist science studies can cast an illuminating lens on questions about biological 鈥減roperty鈥� in medical science. Nye is a professor at the Department of Gender, Sexuality, & Women鈥檚 Studies, where she conducts research at the intersection of feminist science and technology studies, graphic medicine, and performance studies, with a particular interest bioethical dilemmas in genetic science.
In her research on breast and ovarian cancer, she found that a dominant medical epistemology that frames the body as a single, bounded unit shapes us how to view biological materials as literal property that can be patented and owned. In the case of Molecular Pathology v. Myriad, this medical epistemology was pushed to its ultimate conclusion. Although Myriad鈥檚 view ultimately did not hold up to legal scrutiny, Nye argues that it nevertheless represents a dominant medical epistemology that feminist science studies criticizes.
鈥淥ne of the key tenets of feminist science studies is that all knowledge is situated: it comes from somewhere,鈥� says Nye. 鈥淭he cool thing is that if we can better understand and communicate where our knowledge is (and isn鈥檛) coming from, we can create more robust, accountable, and just forms of knowledge because we are accounting for what we know, how we know it, and how we could know otherwise.鈥�
Nye is also co-author (with Sherine Hamdy) of the award-winning graphic novel . Lissa portrays an unlikely friendship between two fictional characters: Anna, who has a family history of breast cancer; and Layla, whose father struggles to receive medical treatment for his liver disease. Informed by hundreds of interviews and ethnographic study, Lissa draws out the similarities in bioethical dilemmas between its two main characters against the backdrop of the Egyptian revolution.
"If we can better understand and communicate where our knowledge is coming from, we can create more robust, accountable, and just forms of knowledge because we are accounting for what we know, how we know it, and how we could know otherwise."
Coleman Nye, Gender, Sexuality, & Women's Studies professor
Tell us more about how the topics of breast and ovarian cancer focalize your medical humanities research.
I was originally drawn to the topic because the diagnosis and treatment of genetic cancer risk complicates the idea that patient decision-making is individual. Genetic risk means that it鈥檚 not just about the patient鈥檚 body鈥攖he entire family is implicated because they share DNA. With a lot of women I interviewed, even if they hadn鈥檛 had cancer, they had been living with cancer their whole lives because it impacted close family members. American actress Angelina Jolie, for example, preventatively removed her breasts because she had inherited a 鈥渇aulty鈥� gene from her mom and didn鈥檛 want her own kids to experience watching their mom become sick with and pass away from cancer. This case illustrates what is the case for all of our bodies and medical decisions: they don鈥檛 happen in isolation from our social relationships, but are deeply embedded in them.
Why is it important to approach medical topics from an intersectional and interdisciplinary lens?
The short answer is: because things like illness or medicine don鈥檛 respect disciplinary boundaries. Medical knowledge isn鈥檛 neutral, and when we don鈥檛 acknowledge that medical knowledge is part of the social and political contexts in which it is created, we risk replicating certain unexamined biases. This can lead to excluding certain populations from treatment and limiting the kinds of research that can be done. Our bodies are complex fields of interaction with the world, including environments, emotions, infrastructures, and policies that all shape our health and well-being. So, what happens when we do genetic research that starts from this premise鈥攖hat our knowledge isn鈥檛 neutral and our bodies aren鈥檛 divisible? Will new questions become possible? And with those new questions, new answers?
Can you explain why your academic work explores graphic mediums?
The unique combination of text and image in graphic forms opens up so many possibilities for communicating complex realities in a highly accessible and readable format. This is particularly useful in our project, which bridges different contexts 鈥� Egypt and the US 鈥� and different worldviews, as our characters navigate difficult ethical decisions about life-and-death treatment in shifting political landscapes. The juxtaposition of text and image also allows for visually rich storytelling that conveys the visceral dimensions of illness, while the levity of the comic form can lighten challenging material such as cancer, organ failure, and political violence.
How do you look back on your comic Lissa, half a decade after its publication?
When I started this project, it was an ambitious and experimental undertaking in academic publishing. Lissa was an unusual academic text not only because it was in a graphic format, but because it was a work of fiction (though based in ethnographic research). Graphic novels had not yet gained much of a foothold in academia at the time of its publication. Looking back 5 years on, it鈥檚 incredible how much has changed in the academic landscape. Lissa has sold over 20,000 copies, there are numerous new graphic anthropology texts, and there has been a surge of interest in multimodal publication. It鈥檚 really exciting to see!
In one of your courses, the final grade is 50% comprised of a Body Journal. Why is it significant for students to write about their own embodied experience as an object of academic study?
Each week, I give students a prompt related to the readings that invites them to explore a different way in which their own bodies don鈥檛 end at the skin鈥攆rom the foods they eat to the social categories and political systems that shape how they move, what they know, and who they are. I find that asking the students to bring curiosity to their own very specific experiences encourages nuanced ways of thinking that can help them question their own assumptions.
I have previously used the classroom as a space to create our own comics, and the results were spectacular and surprising. Students learned how to think through, with, and about drawing; and they were able to create moving and sophisticated visual narratives from their own life experiences. One student even published her comic 鈥淏ye Bye Brenda鈥� in the BC magazine .
Bonus question: what do you enjoy most about your work?
I鈥檝e always been drawn to the arts and humanities because of the ways in which one powerful play or film or song or photograph or poem or book can profoundly shift how a person sees the world: it can transform what they imagine is possible and what they believe to be true. It鈥檚 a gift to be in a job that allows me to engage continuously in practices of seeing the world anew, and to share these insights with my students, my colleagues, and my readers.