What was your journey in getting involved with your current research/work?
The incubation point was when I was a PhD student at Northwestern University working on advanced biomedical technologies. And honestly, it was such a dream position to work in this group and do this research. But it was when I first came across the pulse oximeter paper, and I saw racial bias in this tool that I was building into my wearable devices. I was like, “wait, nobody's ever told me about this!” Nobody ever talked to me about this. And I brought it into our lab group as a discussion topic, and basically found that all these incredible scientists and thinkers that were part of my lab had never heard about the pulse oximetry problem, and I feel like it was sort of this moment of aha, where I can't not want to focus my energy and effort towards this problem. It was shocking to me that this device has been so widely used for decades, and there's still this real clear discrepancy that's really impacting patients. And so I felt like there were ways to explore it in the lab, but that it was also not really a conducive environment. I didn't say this in my talks, but my PI at the time was skeptical about whether we should even be pursuing this research. So it wasn't really an encouraging environment to pursue it. Other methods and policy showed up as a tool and a place where I wanted to dedicate energy, and I applied and got this fellowship. I got selected to do this whole project on pulse oximetry and racial bias and how we could potentially bring about these corrective policies. And so it was just the spark I needed to keep going. I think otherwise, it would have been a lot harder to try to work in an environment where people were even just doubting that the issue existed, right?
How do you use/apply medical humanities to your field of work?
I never really took a discrete education in medical humanities, maybe not explicitly. I took two ethics classes at Rice, the ethics data and society course and the bioethics and Indian traditions course. So it was definitely like I had an interest and wanted to ground kind of what I did in those kind of moral and social conditions. But it really was a lot of my work while I was still in my PhD, of talking to patients about how they feel like they have the ability and capability to shape biomedical research. That got me just more so incredibly interested in the power dynamics in biomedical research and development—who has the power in the state to actually shape the technologies that get built, and how because of engineers and scientists as a social class that have often been of majority backgrounds (white males), there’s so many different research questions that are not being asked, and so many different technologies that aren't being built and things that aren't being solved. With my project, it felt really right to think about, the expanded need for more diverse representation in the groups that are building medical technology and shaping the policies. And I think some of my ongoing work is on how the federal government can actually invest and build the infrastructure through which communities can engage in scientific processes. There's a lot of discrepancy in power dynamics that are really needed to be mended. But the federal government has a growing interest in how they can do this engagement work. And they're traditionally science agencies. They don't know how to do engagement. They don't know how to do relationship building. They don't know how to do trust building. And so there's such a need for that social sciences and humanities perspective to teach people how to do science in partnership with communities. And my hope is that we can grow it into a workforce that will actually mean that there's a pathway through which people can be doing community engagement work.
If you could ask people to take away one thing from your lecture today, what would it be?
I think people should take away that these ongoing issues are fixable, because I do think racism, gender bias, all kinds of these biases feel so intractable. But I think the thing that I like to focus on is that there are solutions. And so how to map out the solution so that people know what they could possibly do to address these issues is really fun, and I hope that the talk today gave people an idea of what they could work on.
What current topic in the medical humanities field do you think is most important to create awareness about?
I think there's a frontier of work that's going to need to be done around, how do we effectively engage patients in the public, in how we do scientific research and medical research? It wasn't in my talk this afternoon, but the National Institutes of Health has this initiative. It's called the Engage initiative, and it's how the NIH is trying to build a framework for how they do public participation and engagement in their research processes. They are finally getting all this information, but I do think there will be an ongoing need to show true frameworks, regimes, methods, strategies for doing equitable, participatory engagement in biomedical research with patients. And if there are groups that are able to work on that and show the methods and show they work, I think it'll actually be really cool for the NIH as they start to do this. And it's the NIH Director's priority–she's super on board.
How do you use what you learned from Rice in your current research/work?
Oh, my goodness. I feel like so many places this can go. I honestly will focus less academically. I feel like the culture of Rice really empowers undergraduate students and really calls on you to be a part of shaping your experience and be a part of shaping your communities. I was really involved in student government, and I think honestly, being a part of these important policy conversations/policy debates and figuring out how to build, a more equitable campus like that, and being empowered to be engaged and involved in that as a student, really informed what I do now in my policy work, but at a larger scale. So it's very cool to have received such a really awesome, empowering undergraduate experience that I think really gave me the things I needed to be successful in my career.
*This interview has been edited for length and clarity.
photo credit: Owen Jin