Bioethics and Community Engagement with Jess Holzer

ALEX WOODSON: Welcome to the Carnegie New Leaders podcast. I'm Alex Woodson.

Today I am joined by Jess Holzer, assistant professor of health professions at Hofstra University. Jess has a Ph.D. in bioethics and health policy from the Johns Hopkins Bloomberg School of Public Health and held a post-doctoral fellowship at the Department of Health Policy and Management at the Yale School of Public Health.

Today we will be talking about bioethics, public health, and, for something a little different, active transportation on Long Island.

Thanks for coming today, Jess.

JESS HOLZER: Thanks for having me.

ALEX WOODSON: Just to start, how did you get interested in this field, in ethical issues in health?

JESS HOLZER: I got interested in high school. I took an elective on constitutional law, and as part of that course we read a number of different court cases. We read Roe v. Wade, we read [Jacobson] v. Massachusetts, and these are issues where societal good and individual harm and the law and politics really crash together. Roe v. Wade, obviously, I think anybody who is listening probably knows its history, or at least most of it.

Just becoming exposed to that, I really got interested in this intersection between science, society, and the law or policy. With that, I went on to Wellesley College, which is famous for its political and economic courses. I was like, "I'm going to get a degree in poly sci and all of this," and then I took some poly sci courses and I was a little disheartened by them. But I loved my biology courses, and so I stuck with my biology courses. They happened to offer a series of interdisciplinary courses called bioethics. They were primarily led by Adrienne Asch, who was a famous sociologist who worked on disability rights issues. She was holding all these courses on reproductive rights, so that was right in there with Roe v. Wade. Stem cells at the time, in the early 2000s, was a really big issue that people were trying to wrestle with. So I took a number of courses with her.

Through that I got introduced to people who were working in bioethics, and I was really introduced to this concept of bioethics as a field. That seemed to meet my criteria for this science and society. We had the bio- part of it, and we were talking about the science of stem cells, the science of reproduction, the science of death and dying. What is possible really pushes ethics ahead, so things like brain death, the ability to keep organs alive even as the brain has died, challenged every conception we had of what it meant to die, and we had to redefine death at that point.

So bioethics has been dealing with those issues for much longer than I have been alive, and being introduced to that, I was like, "Oh, this is my place. These are my people." So that got me interested in that.

From that point forward, I determined that I was going to pursue a Ph.D. in bioethics—actually, I think, my freshman or sophomore year in college. It has been a roundabout pathway, but I have stuck to it in some fashion.

ALEX WOODSON: As you worked through your courses and your Ph.D., what specific issues really grabbed you and which have you been focusing on since then?

JESS HOLZER: It has changed a lot over time. I think it is purely based on serendipity and the interesting questions that are presented to me.

In my undergraduate career I was really interested in reproductive ethics, thinking about stem cells, what it means to preserve stem cells from an embryo, those sorts of things, in vitro fertilization (IVF), any of the ways in which babies are or are not produced was really interesting to me.

Then I went on and got my Master's degree at Case Western Reserve in Cleveland, and I worked with someone there who did a lot of international ethics. It was fascinating to me because that introduced the question of community values, and particularly the clash between Western traditions of ethics and ways of thinking about rights and privileges with non-Western traditions. Particularly in Asia or Africa, you have more of a community focus, you do not have as much of this individual risks perspective. It becomes a real challenge for researchers to go and do work in international settings because we are bringing our individualized focus. We have informed consent that is very focused on the individual saying, "Yes, I want to participate," and it clashes in communities there. So I was super-interested in that.

But then I got into my Ph.D. program, and I thought, international, international, international. Johns Hopkins is in a really interesting place, in Baltimore. Baltimore is a city that is beset by a lot of hardship. Just from Johns Hopkins, the Bloomberg School of Public Health is on the medical campus, and it is on the east side of Baltimore. From it, you can look down into a neighborhood that looks like it has been bombed out—houses are collapsing in on themselves, they don't have roofs. So I was thinking how much difference I could make internationally, and then I just looked out the window and I'm like, "Oh, I don't have to go far to find people who are living in Third World conditions and who are really struggling."

That really brought my focus more domestically. I thought about the stark difference in the life I was living and the life I could see being lived. That really made me start thinking about communities in particular and community rights and community benefits vis-à-vis research, vis-à-vis medical care, and all the things that health and having health can open up in terms of prospects and opportunities.

ALEX WOODSON: This is one of the subjects of your papers—part of it is available online—from 2014, entitled "Why We Need Community Engagement In Medical Research." I was wondering if you could give a broad overview of that first, and then we can see where the discussion leads.

JESS HOLZER: The piece that I wrote with two colleagues, Lauren Ellis and Maria Merritt—both were at Hopkins at the time—is on what about medical research demands community engagement. The idea is essentially that communities bear the burdens and benefits of research, and those are both things to be achieved from research.

A lot of times we think of research as a burden, but fundamentally research also brings about benefit, if it is done in its best possible way—things like access to drugs that have been tested in the specific context that you are in because we know poverty affects health, we know that systematized racism affects health. So, if all the research has been done on people who do not experience poverty or do not experience systematized racism, we do not necessarily know that the drugs will have the same benefit or that the protocols will have the same benefit out in the wide world.

That is one of the struggles in research, that oftentimes you try to get the best population to get good data for your research, but that is not necessarily a representative population of who would use whatever it is you are producing, a pill, or a medical protocol, or an education protocol. That means that the people who are most in need in the community will not benefit from the research because it is not designed for them, it has not been tested with them, we do not actually know if it really works for them the way we know it works with a more affluent population, maybe a more white population.

That is why I really started to think about communities, and thinking of communities as organizations of people that could benefit from research that are not necessarily involved in research. And they are not involved for very legitimate reasons, both on their part and on the part of researchers. This is an evolving area and there are still a lot of questions going on.

One of the key issues is a lot of the communities that are underserved have this history with bad actors: so the Tuskegee study, the recently revealed Guatemala study where the same group of people who were in the U.S. Preventive Services group were performing studies on syphilis and gonorrhea in Guatemala with people who were incarcerated, people who were in the military, and sex workers. Those people were similarly deceived, and in that case they were also exposed to diseases that otherwise they would not have necessarily been exposed to.

Those issues arise, and they keep individuals from communities who might need and benefit from a lot of medical research from participating because they are legitimately afraid of the abuses that they might face. And those abuses have modern siblings as well. It is not just the case that in the 1950s people were doing bad things but now we have gotten over it. It is still happening today.

I am very interested in those communities being able to set the rules. If researchers set the rules we have seen that that can lead to very negative consequences. But if communities set the rules, they serve as their own protector, they get to say, "This is the boundary." One thing researchers know is they know how to get good science, and good science sometimes cannot be done by people who do not understand it. And if you do not do good science, you also waste people's time.

So the idea is basically you get researchers and communities together. They are equal partners in designing a research project, executing it, analyzing the data, and by so doing they each bring their best assets to the table and they function as a check mechanism on the other's perhaps worst inclinations. I don't know that I want to make it so negative. But the researchers bring good science, the community members bring a sense of what the community needs and wants, and functioning together in their best format, they can get really good research that is immediately applicable and really benefits the people there.

That also provides some equity in the distribution of research's benefits. That is really what that paper was about, is why we need to start doing this. We need to start distributing the benefits of research, and we need to be careful of the burdens, and the best way to do that is to have communities involved.

ALEX WOODSON: One of the phrases that the paper mentioned a few times was "demonstration of respect." What does that look like specifically? What are some specific cases that you can share with us?

JESS HOLZER: It really varies by community. This is one reason why, though we recommend community engagement in medical research, it is hard to say "it has to look like this," because each community is going to be different.

But, for instance, there is a very famous case of the Havasupai Nation out in the Southwest. The Havasupai Nation agreed to participate in medical research related to diabetes. In the process, blood samples were collected from a large number of people in the community, not everybody. That blood was then taken back to the research institution and it was used to research diabetes.

But then there was blood left over, and the researchers looked at it and said: "Well, this is a resource. We should do research on this. We should do research on things like schizophrenia; we should do research on things like alcoholism, things that are heavily stigmatized; and we should also use this to do research on the migration of peoples across the world. What is the origin of the Havasupai Nation, where do they come from?"

So those researches did that research. They published that research, and they said things about the Havasupai community as a result of these individuals and the blood samples that they gave, and these are very stigmatized things—alcoholism is very stigmatized, schizophrenia obviously also.

One of the key challenges is that this sort of history of movement of peoples directly challenges the Havasupai's origin story and why they have argued to the federal government that they have a right to the land that their reservation is seated on now. You have all this history of taking away from native peoples and the federal government violating contracts with them left, right, and center, and the researches dip a toe in this, and it legitimately makes the Havasupai people very uncomfortable. They say, "Look, this doesn't respect all of our history, how we ended up here. You have made these sweeping conclusions about schizophrenia, about alcoholism, and about where we have come from that directly challenge our right to live where we live. That's really problematic, and we're really pissed off that you never thought to include us in any of these decisions."

That is a form of disrespect. It is a negligent form of disrespect. I do not think the researchers who participated in that ever thought they were being disrespectful. They saw blood samples and were like: "Oh, hey, look. This is great. Let's not waste the blood. We shouldn't just like dump it or leave it in a freezer forever. We should make use of this. This is a fantastic resource." But for the population that they were working on it was a deeply threatening thing to do.

That is why the respect for communities and demonstrating respect—the most basic version of it is just going into a community and saying, "Hey, I get the fact that I bring only these skills to the table" and having that humility. Like: "I am a researcher, I have a Ph.D., I worked really long and hard for this, but I do not have everything I am going to need to know to be perfect and do an excellent job with this research. You have some real resources and I would like to talk to you. I would like to try and create a partnership." That is really that basic demonstration of respect, that humility about what you know, and that acknowledgement of the fact that that community and those individuals within the community have rights and privileges that they are going to want to have protected. Starting from a base of asking, instead of just asserting, that you are coming into the community is really very, very basic.

And it seems so easy, but it is not how researchers are trained. They are trained to look at the science, they are trained to do really good science, and they are not necessarily trained to look at the human implications of that science, the negative consequences of it particularly.

ALEX WOODSON: After a paper like this is published, what is the next step? You obviously want to make changes in how researchers do their work, so what do you do after this?

JESS HOLZER: Part of it is implementing it myself. I write this paper. I believe very strongly in "do as I say and as I do," instead of the "do as I say not as I do" perspective. One of the things I do is that I try to wrap community-engaged research into my career, working with various community organizations, working to really try to ground the research in the communities that the researcher is going to most likely affect, benefit or burden. So that is one thing I do.

I also—I don't know if this segues us into what I do at Hofstra—as a teacher, I am teaching undergraduates who may very well go on to be doctors, nurses, and other paraprofessionals in the medical field, who are going to potentially be doing the research or benefiting from the research. I have a conversation with them every semester every year about community benefit. I teach a class on program planning, which is very directly community-focused. As part of that, we talk about why communities might not want you to come in and do the work. I have community members who I have worked with come in and talk about their experiences and put a face to a concept for the students.

That is one of the key areas where I figure I can make the most difference. I can talk about it to people day-in and day-out, and they will nod their heads, and maybe it will not have much impact, but I think if I am in the classroom I have a lot more sway and a lot more ability to affect at least some of my students in terms of what they are thinking and how they conceptualize their role as professionals vis-à-vis communities that they might work with.

ALEX WOODSON: When you are teaching these courses has anything the students have said or done surprised you so you had to change your teaching methods or anything?

JESS HOLZER: I don't know if I would call it surprising. In part, because maybe I am a little bit cynical about the perspective people come from unless—I get the feeling that I am resetting instead of setting.

A lot of my students and doctors and established researchers come at this with a training set that is "You are doing really good stuff. Everything you do is really good." So I have to reset them to say, "Look, your perspective on what is good is not necessarily shared by everyone who has the potential to be affected by this, and you need to establish some humility about that. You need to acknowledge that nothing is purely good in human work—it is just not. You have to acknowledge that there are ways that you can do it very badly, even with having a goal that is very good," and "the road to hell is paved with good intentions," and all that sort of aphorism. So I find myself resetting the students.

Sometimes the students will come out with things that are just wildly self-centered or simplistic. I had one student once—we were talking about working with populations who are homeless—and the suggestion was, "Oh, we could offer a program that allowed people to come in and pick a suit and have a shower and maybe get a haircut or whatever before they go to their first interview." That could be a potentially fabulous program, and there are programs like that that exist in the world, because how you appear in an interview is really important as to whether or not you get the job. Okay, so that's great.

Then the student follows up with, "Because a lot of homeless people really smell and they don't take good care of themselves." I just looked at the student, and I was like, "Okay. We need to take a step back because that is a disrespectful perspective leading to a program that could potentially be very respectful. It is not that they do not care about themselves. You try and find a place to shower on the streets of New York City. Why they are homeless, how they got there—it is difficult. If you look at it from a perspective of respect instead of this perspective of, 'Like, well, they're kind of gross,'—how it ends up in terms of the program might not look any different, but your approach to the individuals as they come to your program is going to be wildly different and they are going to sense it. We all sense when somebody is disrespecting us but just being nice to look good."

Trying to reset the students to understand how you just at a very basic level talk to the people, your clients, is really relevant. From that grows better programs. If you cannot even come to that, your program, no matter how spectacular it sounds, how based on the evidence, it is not going to go well because everybody is going to sense that you are in it for the wrong reasons or you are not respectful.

So that is more where it is, and I am not entirely surprised. I mean part of the reason that I do this work is because I know that that type of thinking crops up. I have been a victim of that type of thinking. I am no perfect angel on it in any way, but through my training I have sort of come to the light and realized the ways in which respecting communities is so essential, and individuals in communities as well.

That is really how I think of it, as resetting that training and trying to insert empathy and insert humility into the thinking that my students have around it. They are generally very good at it. Usually it is just a question of them not having been made aware rather than them actively denying or refuting the perspective I bring. It seems to have some intuitive sense to them. But it is a question of having been exposed to it that they are really lacking until they take my courses, hopefully.

ALEX WOODSON: That is a very practical way to put it, that there is an extra step you need to think about when you are conducting this research. I think that is a good way to push it through.

Just to change gears a little bit, you teach at Hofstra, which is in Long Island. For people listening who do not know about Long Island, it is a suburban area of New York City—Nassau County, Suffolk County; Nassau County is a little bit more suburban. Obviously, New York City is surrounded by lots of different suburbs. I grew up in the Northern New Jersey suburbs. My wife grew up in the Long Island suburbs, so for the last five or ten years I spent a lot of time on Long Island. It is strange to see some of the differences just 20 miles away.

One of the biggest differences is something that you are focusing on, which is the dependence on cars on Long Island. I remember as a teenager just walking all over my town in New Jersey, and it was fine, and riding my bike. On Long Island there is definitely a different sense there.

You are the secretary of a non-profit called Car-less Long Island. It is pretty self-explanatory what the goal of the organization is. How did you get involved with this? How does it exactly relate to the work that you do at Hofstra and your research?

JESS HOLZER: I do want to point out to anyone who just had a bit of a twitch when they thought about being car-less on Long Island that our goal is not specifically to remove cars from Long Island, but to make it possible for people to be car-less on Long Island. It is funny, because I am also part of a car club. So I enjoy driving. It is not a question of not enjoying driving. But I enjoy driving and not just sitting in traffic, and I think that is one of the key issues on Long Island, that it has so much congestion that simple trips take forever. Everybody is dependent on a car, but they are also really angry all the time at their car, in their car, at other cars.

Going back to my comment about "do as I say and as I do," when I was living in New Haven when I was doing my post-doc work at Yale, I biked to work every day. Even then, New Haven was not spectacular on biking, but they had a pretty good bike culture. It is a relatively small city, so it makes it easy to get around. Since I left, they have actually invested heavily in biking infrastructure: they have bike lanes painted everywhere, the mayor is really on-board with it, and there has been this huge influx. It is really pleasant to bike around that area.

I moved from New Haven to Long Island. I was living in Long Beach, which is a beach community and it has a boardwalk. It has SoBi bikes, which is the Citi Bike equivalent, which you can rent, you can have a subscription to rent a bike, and you can bike the boardwalk, and it is nice. But every other street in Long Beach is terrible to bike on, terrible.

What is interesting is that the vast majority of the high school students—well, I can't say the vast majority, I don't actually know numbers—but there are huge numbers of high school students who bike to high school. You can tell because there is a huge, like a field of bicycle stands, and it is full during the day. But there are no bike lanes. So the kids are biking on sidewalks, they are biking the wrong way against traffic, and whatever. It is just a catastrophe waiting to happen. And it has happened—there have been lots and lots of crashes, just in Long Beach, with kids, with adults, etc.

I was living in Long Beach, I wanted to be able to bike, and there is no safe way for me to bike to work. It is an 11-mile trip, which is a totally doable bike trip, it would be about an hour—and I would not have to go to the gym, right? I wanted to be able to do this, but in order to do it I had to put my bike on my car, I had to drive to Merrick, which is across some bridges, and I had to park in Merrick, and then I had to take a road that was "bike friendly," mostly because it had a wide shoulder.

I was screamed at on that route regularly, that I was supposed to be on the sidewalk, which actually technically is not where I am supposed to be; bikes are not in most municipalities in New York supposed to ride on the sidewalk because it increases the conflict with pedestrians and the likelihood that they will get hit. And people were just rude about biking.

This is my community. I want my community to allow me to bike, to give me what is legally my right.

I was looking for somebody to work on this with. Dr. Sylvia Silberger, who is also at Hofstra—she was the chair of the Math Department at the time—we met at the Hofstra Center for Civil Engagement, which brings around all the community-focused efforts. It is practical efforts around research, but also programming and how Hofstra interacts with the community in general. I was at a meeting with her, and she mentioned this, and I was like, "Oh, my god! We should work on this together."

She is like, "Yeah, you know, I'm starting Car-less Long Island. Do you want to be a part of it?"

I said, "Yeah, sure."

That has been going on for two years. Just through that we have gotten really invested in working in Car-less Long Island.

I look at it as generalized community benefit. When someone is like, "Well, you do all this work on obesity or health disparities or whatever"—if you read up on what I have done—I am like, "Well, active transportation brings all sorts of benefits to a community. Obesity is just one of the things that it can affect. And in general it makes communities healthier. There is less air pollution, there is less congestion, people are more active, so there is less obesity, better air quality."

But also it has economic benefits. There has been some research that suggests that if you invest in cycling and pedestrian infrastructure, because you have slowed people down and removed the need to park your car and get out of your car and go do things, people tend to stop and window-shop or actually shop more, and local businesses can see real improvements from it. If I am going to walk, I am going to walk to the businesses closest to me rather than going to the mall, which is designed very much around the car—no one walks to the mall unless they are 13 and have no other choice.

Removing that perspective that the car is our best asset to get around generally reinvests economically and socially into local communities. That gets back into my community benefit and getting back into all of those things that I think are very tied up together because it is not separable. You cannot say, "Oh, I am working on diabetes in this community and I am ignoring everything else about the community that might contribute to diabetes." People get diabetes in communities because of lack of access to exercise, because of poverty, because of lack of access to healthy foods. Diabetes is a symptom of a community that is struggling, so if you see high rates of diabetes in the community, that community needs investment more than just we need to address diabetes in a very narrow focus.

That is my thinking. It is just this very broad focus of how do communities get better, how do we invest in communities and improve communities. Nassau County at the time was my community. Now I live in Queens, but still, because I work in Nassau County, it is still a community that I am in regularly.

ALEX WOODSON: What are some of the specific things that Car-less Long Island has been doing?

JESS HOLZER: We have a couple of different initiatives. Our biggest flagship initiative is that we have a Bike-to-Work Parade every late April, getting set up for May, which is National Bike-to-Work Month.

Usually in late April—I think it is April 28 this coming year, you can find it on our website, which is car-lessli.org—we gather a group of people and we bike around Hempstead, which is right in the center of Nassau County. It is right near the Nassau Hub—Roosevelt Mall. We bike around the Nassau Coliseum, which is both an economic and social hub, and they are trying in Nassau County to really invest in that area—bring food, bring businesses, bring all sorts of things to that hub. We bike through that area. There actually is a bike lane there. It is a separated bike lane. It is really nice. It is a two-way bike lane separated from the road. There is a verge of grass that protects you from it. It circles around the Coliseum, over to Eisenhower Park—it is a little iffy how you get into Eisenhower Park. There is all this infrastructure, and it is connected to nothing, but we bike around it because it is a safe place for people to go, and it demonstrates that there is energy, there are people on Long Island who would like to bike.

And we have bike groups come out, we have individuals, the Ethical Humanist Society of Long Island—Sylvia is also a member of the Ethical Humanist Society, so a lot of their members come out. It is just meant to draw attention to the fact that people would bike and would walk on Long Island if it was safer. There are people willing to get on a bike.

It is not that people are like, "Ugh, I would never bike." It is that they say, "I would bike if it were safer, if it wasn't a death sentence to get on my bike in Long Island, I would be biking." So that at least overcomes the barrier of "nobody wants this."

This coming year is going to be, if I have my math right, our third year doing it. We are trying to get a lot of people involved. We are trying to get student groups from Hofstra, from Adelphi, other local universities, to get involved. It has been good. For the last few years we have had good turnout. We also have various organizations like 511NY Rideshare, which is working out of the Metropolitan Transportation Authority (MTA) to connect people, so that instead of driving as a single person, even if you don't have transit there, you could carpool, you could do a vanpool. They will come and present at it. And other organizations that are interested will come and present. That has been our flagship activity.

We are also collecting data on crashes on Long Island, so we have our crash list and we are mapping it. The idea behind that is to just draw attention to how many people are hit in how many places. It is a design issue. It is not an accident that people are getting hit, it is because we have such poor infrastructure. People are walking because they have to, people are biking because they have to, and they are darting across roads and getting hit by cars because there is no pedestrian infrastructure.

That is a project that we are working on that is actually a research project that I have been leading, and that is on rating infrastructure on Long Island. The idea is basically you can map pretty much where there is infrastructure, where they put in a sidewalk once upon a time, where there are bike lanes, etc. But that does not tell you what it is like to use it. If the sidewalk is poorly maintained, there are bushes growing over it, there are roots coming out of it, that is going to make it difficult for anybody who is in a wheelchair, who is vision-impaired, who is walking with kids or a stroller, to really use that. If drivers are zooming by and running over the crosswalk and whatever, even a perfectly able-bodied pedestrian is going to be a little bit concerned about walking in that area.

We have started collecting data on the quality and usability of different areas and focused on transportation. A lot of the work that has been done about biking and walking on Long Island is about recreation—making parks nicer, extending paths through parks or connecting parks—but not "how do I get from home to school or home to work."

That is really where Car-less Long Island is starting to focus: "How do we do transportation?" Not just recreation—recreation is great and we encourage it, we do not consider it any type of challenge to what we are doing—but we want to think of transportation.

ALEX WOODSON: This all goes back to what we were talking about before, having respect for the community.

JESS HOLZER: Yes. Long Island not only is aging, but more and more people who are economically disenfranchised or low income are living on Long Island. Because of the aging population, you are getting a greater number of people who are resource-constrained. They are retired, they are not making more money. Maybe they are also becoming visually impaired or physically impaired in a way that it is going to be difficult for them to drive. That is isolating them. That is resulting in them not being able to get out of the house. We know that that results in increased risk for dementia, increased risk for heart disease, and other types of chronic illnesses because they are becoming asocial.

So we have an aging population. We have this perfect storm of things coming in. They are seeing their economic resources decrease, they are seeing their access to driving decrease. We also have a younger population, primarily immigrants and people who are being pushed out of New York City because of pricing, moving into Long Island, and they cannot afford a car, or they choose not to afford a car, because it is an expensive proposition, especially as insurance rates go up and as gas rates go up.

So you have these two populations who are both looking to be car-lite, less need for a car. They do not want to own a car, or they want to use Zipcar or other car services. Those populations are going to start demanding those services, particularly for populations for whom it is not a choice not to own a car. They are materially constrained because Long Island refuses to or has not yet invested in pedestrian and cycling infrastructure.

That is where the bioethics really gets back in there. If you wonder how I go from ethics to active transportation, it is an equity issue.

ALEX WOODSON: It is a great project and I wish you a lot of luck with it.

JESS HOLZER: Thank you.

ALEX WOODSON: Thank you very much for coming today. This has been Jess Holzer from Hofstra University and Car-less Long Island.

JESS HOLZER: Thank you for having me.