A Conversation: Science, Ethics, and Policy

The word “bioethics” dates only to 1927, and the subject, as an academic discipline, is only about 50 years old, but the ethical questions that accompany scientific discovery are ancient. Modern advances in molecular biology, genomics, and medicine are dazzling yet often accompanied by deep ethical implications. We can now extend life, modify life, and in some cases even create life in wonderful yet potentially troubling ways. What science can do and what it ought to do are distinct concerns that have pricked the consciences of policymakers, philosophers, social scientists, and even artists and authors such as Mary Shelley and H.G. Wells.

ELIZABETH MITCHELL ARMSTRONG *93 is an associate professor of sociology and public affairs with a joint appointment in the Office of Population Research. Her research focuses on the sociology of medicine, public health, and medical ethics, including obstetrical ethics. She is head of Butler College.

CLIFFORD P. BRANGWYNNE is the June K. Wu ’92 Professor in Engineering and director of the Princeton Bioengineering Initiative. His research focuses on cellular and biomolecular engineering, with possible implications for the treatment of diseases such as ALS (amyotrophic lateral sclerosis) and Huntington’s disease.

CATHERINE CLUNE-TAYLOR is an assistant professor in the Program in Gender and Sexuality Studies. A philosopher with an undergraduate medical sciences degree in immunology and microbiology, her research takes an interdisciplinary and intersectional feminist approach to the science, bioethics, and biopolitics of medically managing intersex conditions in children.

OLGA G. TROYANSKAYA, a professor in the computer science department and the Lewis Sigler Institute for Integrative Genomics, focuses on biomedical informatics and genomics. Her research combines machine learning and data science with laboratory research to understand the molecular basis of human disease and enable more precise diagnoses and treatments.

Mark F. Bernstein ’83: There are many controversial topics in bioengineering. Are you working in any areas in which you think it would be useful to get input from people in the social sciences and humanities?

Olga Troyanskya: It’s critical for us to consider ethical implications as part of how we think about bioengineering and also a different field that I work in, data-driven medicine. The field of data-driven precision medicine can revolutionize how effective treatments are, such as targeting them to groups of people sharing particular genetic alterations. However, input from ethicists is critical because if we do this wrong, that could also carry serious adverse effects on individuals and populations. An obvious one is the lack of treatment access for underrepresented communities. 

One famous example of this is kidney transplantation. A quantitative metric used to calculate transplant eligibility aims to allocate kidney transplants to individuals who are in need of one due to failing kidneys. However, we now know that it can lead to an overestimation of kidney function of Black individuals, resulting in their exclusion from transplant eligibility lists. 

Alzheimer’s certainly affects large sectors of the population. Should we invest more research, energy, funding, and attention to that sort of disease versus certain genetic disorders that are heartbreaking but very rare? Where, as a society, do we want to devote our resources and attention? Who decides what science gets done and for whose benefit? —Elizabeth Mitchell Armstrong *93

Illustration: Kathryn Rathke

To take another example, in bioengineering, we now have unprecedented ability to genetically edit cells and embryos. This technology could someday be used to cure medical problems, such as congenital heart defects, enabling people to have healthy babies, but it also could be used to edit certain genetic conditions out of the population. Is such “germline editing” ever ethically appropriate? How will it affect people’s reproductive decisions and the diversity of our population? And at which point do you stop? We need to think about how to better tackle these extremely challenging ethical issues, and we need bioethicists and scientists together in these considerations. 

Clifford Brangwynne: I think about the ethical implications of work that we do in cellular engineering. Part of my research is in using cells in what we might call forward engineering. We’re getting in there and tinkering with the genetic machinery in some cases to understand how they work, but at other times because we want to change or fix the functioning of cells or augment their function in some way. Historically, there has been a gut reaction against modifying life in any way. 

The lines become blurred as we get into bioengineering. There is a concept of synthetic biology, where you can actually make things that are alive. But even the definition of what is living is difficult. For example, a virus is not really alive, although it is made from biological material. But if you think about building something from scratch in the lab, from inert molecules, ultimately one can imagine making things that start to have functions shared by human organs and tissues. So, there’s a whole spectrum of what is now possible.

Many people have a gut reaction that we don’t want to do that. But it’s important to recognize that there are very strong ethical arguments for that kind of research. For example, thinking about immunotherapies, where you take and modify immune cells and put them back into patients to specifically target cancers, and introduce them in the cells — that’s engineering cells to have a function that they didn’t have before. And I think nobody would disagree that this is a very good function because, of course, we’re all at risk of cancer. 

One of the things I want to emphasize is that in ethical discussions around bioengineering, we need to be thoughtful about it because one tends to think naively that this is about establishing breaks or boundaries. But I think many bioethicists would argue that in some cases we should be accelerating such research because there are moral arguments for treating diseases such as Alzheimer’s, ALS, and pediatric cancers. Those pull at the heartstrings of all of us, and bioengineering has a place for addressing those needs. 

Bernstein: Betsy and Catherine, do you have thoughts about these issues?

Elizabeth Armstrong *93: I have a ton. (Group laughter.) First of all, almost none of this is new. These fundamental questions — how to define life and how much of a role we should play in who gets born and who lives — we’ve been wrestling with them for at least a century, if not longer. 

Another thing that occurred to me is this question of societal priorities and who decides. Scientific agendas are often set by individual scientists. There’s some role for society in, say, the kinds of funding priorities that NIH lays out, but only at the margins. Cliff, you mentioned Alzheimer’s as a research priority. Alzheimer’s certainly affects large sectors of the population. Should we invest more research, energy, funding, and attention to that sort of disease versus certain genetic disorders that are heartbreaking but very rare? Where, as a society, do we want to devote our resources and attention? Who decides what science gets done and for whose benefit? 

Most laboratory values are biased toward white males. But changing that is not as simple as, for example, including a Black population or a Hispanic population, then redoing the lab values. The diversity within the Black population is very large. —Olga G. Troyanskaya

Illustration: Kathryn Rathke

Then, when we get down to the clinical applications, Olga raised the case of the kidney transplants and the way the algorithm led us far from what we might think of as an optimal allocation of this resource. That raises even further questions about how we allocate treatments once we have them. We spend a lot of time thinking about how to allocate rare resources such as a kidney, but we need to think about who’s deciding what science gets done. And then, how are we deciding who benefits from these new technologies; who gets access to the treatments? 

Catherine Clune-Taylor: The feminist philosopher of science in me is always a little bit suspicious of the kind of “natural versus unnatural” or “biological versus synthetic” binaries because we know that the lines we draw to create those binaries aren’t that simple.

I do think, as Betsy says, all of this is tied up in values. And it’s not just that we need to be thoughtful about them. We need to be very clear and specific about what our values are. We need to check that our work aligns with our values, and not only at the project choice, or even at the conclusion phase. It’s not enough to say, well, we’ve come up with this technology; how is it going to be used? We need to keep our values in mind at every stage, from this issue of prioritization to the kind of tools we’re using. Olga brought up the issue about kidney transplants. We know that issues with kidney function are disproportionately experienced by people of color. But our algorithms for who should receive a transplant skew toward white populations.

For a very long time, this kind of seemingly neutral algorithm has been systematically discriminating against patients of color, somehing that we now do not want or do not expect it to do. However, this discrimination embedded within the algorithm was not coincidental, or some unintended effect. The history of medicine is the history of scientific racism, and many of the metrics that we use in medicine, for things like lung volume and lung capacity, skew toward white populations. Part of the concern about algorithms is that they are often presented as being unbiased or neutral tools, and it can be hard to tease out how values are hidden within them. One of the primary concerns I have about bioengineering is in the suggestion that it aims at improving equity — or at improving outcomes in an equitable way — because that isn’t necessarily the case and won’t necessarily be the outcome, unless we’re very intentional about it.

Think about the COVID-19 vaccine. That represents a huge success of bioengineering, and yet only 60 percent of the world is fully vaccinated. So, when we talk about health, I think we need to be very clear about whose health are we talking about and whether we have a way of ensuring that our concerns about equity are being met. —Catherine Clune-Taylor

Illustration: Kathryn Rathke

So, for example, we can think about research on trying to get more precise methods for treating diabetes. But it’s not clear to me that those tools, once we have them, would help the people who need help the most. We’re putting a lot of money into this kind of medical research, where I would argue that the thing that might actually improve diabetics’ lives is a cap on insulin prices. Technological advances often are disproportionately accessed by people with privileges. Those diabetics unable to access such advances would still be left to deal with soaring insulin prices. 

Think about the COVID-19 vaccine. That represents a huge success of bioengineering, and yet only 60 percent of the world is fully vaccinated. So, when we talk about health, I think we need to be very clear about whose health are we talking about and whether we have a way of ensuring that our concerns about equity are being met.

Troyanskaya: Maybe I am being optimistic, but I think that most of the technologies that are going to be developed in bioengineering are going to be broadly applicable across society. Now, whether they actually get distributed equitably is a totally different question.

Bernstein: Do these ethical concerns inform what you research or how you conduct your research?

Troyanskaya: Kidney disease is a major focus of my work, but it’s fascinating how little attention kidney disease gets. Diabetes and chronic kidney disease are among the largest expenses for our public health-care system. They’re not rare conditions. Catherine, I completely agree with you that the biggest impact on equity for diabetes care would be just to cap the price of insulin. And honestly, the biggest impact on overall population health in the United States would probably be if we could make people not smoke and eat healthier.

We absolutely must push on those, but I think we also should think about how we can develop the high impact medicines of tomorrow in a way that takes equity into account. For example, most laboratory values are biased toward white males. But changing that is not as simple as, for example, including a Black population or a Hispanic population, then redoing the lab values. The diversity within the Black population is very large. 

It’s important for the folks on the ethics- policy-history-philosophy side to know something about the science in the same way that it’s important for the scientists and engineers to be thinking about the ethical, philosophical, and societal implications. —Clifford P. Brangwynne

Illustration: Kathryn Rathke

Brangwynne: All advances in technology have unexpected social consequences, whether it’s the steam engine or nuclear energy or computers. So, any time technology advances, there are things that we want to keep an eye on. And the pace of technological change in all areas is accelerating so rapidly that we can’t take reactive positions, because it’s sort of too late at that point. We’re at this sort of inflection point in bioengineering. Over the coming several years we’re going to see huge changes and new technologies where we can really build cells from scratch. We will soon be able to augment even human biology. We’ve got to understand that and think about it as it’s being developed, not just wait for it to happen, and say, “Oh wait, I don’t know how to handle this.” 

Bernstein: Are such conversations taking place at Princeton and, if not, is there a way to facilitate them? 

Armstrong: To be blunt, no, they really don’t occur. We could point to all the structural impediments that impede these interdisciplinary discussions from taking place. Catherine identifies herself as a bioethicist, but for so long in the United States, bioethics has been dominated by clinical medicine. The people who specialize in bioethics in the United States are trained to intervene at the individual level in very specific clinical dilemmas. Should this person get this organ or not? Should we prolong this person’s life? Those decisions do have broader social implications, but we need people who have training to think about these issues in a broader societal perspective.

 In many cases, we lack the tools to think about these things at something other than the individual level. In the example Olga gave about the algorithm that was leaving certain vulnerable patients off the target transplant list, we’re still caught up in the question of which patient is getting the organ transplant rather than asking why we have so many people with kidney disease in the first place. 

Clune-Taylor: We don’t have a good way to train people who can look at the big picture, who have the required tools for this kind of larger-scale social, political, and ethical analysis. They end up kind of being weird people like me, who jump around disciplines. However, we’re very into disciplinary boundaries as academics, and policing boundaries plays a large role in constituting academic authority, allowing for a kind of hierarchy or prioritization of the disciplines themselves. 

I would say one other thing, and this is the Canadian in me coming out, but it is clear to me that we can’t think about bioengineering in relation to health outside of issues of labor and capital. The American health-care system runs on a kind of business model, so I am very pessimistic, for example, that new bioengineered treatments for kidney disease or diabetes would actually reach the most vulnerable people. In part, bioengineers, or their algorithms, might deprioritize poor people because they’re less healthy, without thinking about the way that poorer health is itself socially constituted as an issue of privilege. Sure, it would be great if everyone ate better, but some people just can’t afford that. 

I am giving a talk at Dartmouth about racialized, targeted interventions against COVID. Many people have suggested that vaccine hesitancy in some BIPOC communities was because of the continuing legacy of the Tuskegee syphilis study, which ran from 1932 to 1972, so they have good reasons to be suspicious. In fact, if you talk to these folks, their vaccine concerns weren’t about Tuskegee; they were because they had had a racist incident with their own doctor. Many of the BIPOC folks I’ve talked to were suspicious of a health-care system that now tells them that this thing, this COVID vaccine, is free because it’s good for them, and because without it, they might die. Insulin is also good for them, and without it they will definitely die, but the health-care system doesn’t care that they can’t afford it. 

Brangwynne: I think historically we’ve thought that science should be separate from society, when we know that is not true and can’t be true. But that doesn’t mean we necessarily train scientists to think about that.

Concerning these sorts of interdisciplinary conversations on our campus, I think Betsy told the hard truth, which is they’re not really happening. Or they’re not happening nearly as often as they need to happen. And those are conversations that the Princeton Bioengineering Initiative hopes to ignite on campus.

Catherine described herself as weird because she knows something about the science and also about these philosophical and ethical issues. That does seem to be rare, but it’s important for the folks on the ethics-policy-history-philosophy side to know something about the science in the same way that it’s important for the scientists and engineers to be thinking about the ethical, philosophical, and societal implications. And I think by and large, even at liberal arts universities that value these broader discussions, the scientific education and training do not emphasize that.

We can do a much better job with those conversations. I hope that is one of the things that’s ignited from this discussion. And, just as a plug, I’ll say that the Princeton Bioengineering Initiative is starting a new distinguished lectureship on ethics in bioengineering this fall. We hope to use that in part to grow this conversation and engage the broader University in these critical questions. 

Bernstein: Thank you all very much for participating.