Video: Bioethics on the Margins: Vulnerable Populations and Health Outcomes

February 20, 2019
wylin wilson

Wylin D. Wilson, 2018–19 WSRP Visiting Associate Professor, delivers the lecture "'Bioethics on the Margins: Vulnerable Populations and Health Outcomes."




CATHERINE BREKUS: She is, right there. I'm Catherine Brekus. I am filling in in the Women's Studies and Religion Program this semester for Ann Braude, who is not sitting in the corner of the room over there.


She loves this program so much that even when she's on leave, she just can't help coming to hear the talks.

So it's my pleasure today to introduce Wylin Wilson. Professor Wilson has many degrees. She has a Master of Science in Agricultural Economics from Cornell University, a Master of Divinity from the Interdenominational Theological Center, and a PhD in Religious Social Ethics from Emory.

Currently, she teaches in the College of Agriculture, Environment, and Nutrition Sciences at Tuskegee University. She is the author of numerous articles about African-American health activism, integrative bioethics, food, and social justice, and the legacy of the syphilis study at Tuskegee.

In 2017, she published an important new book, Economic Ethics & the Black Church. Today, she'll speak about her WSRP research project, "Bioethics on the Margins-- Vulnerable Populations and Health Outcomes." Thank you, Wylin.

WYLIN D. WILSON: All right. Thank you so much. Can you hear me? You can hear me? OK. Great, great. So I'll just get right in. Thank you all for coming, for being here, and sharing this time with me.

And I'll just start out just talking a little bit about my book project that I'm working on this year. And it explores the connection between health, gender, and religion. But what's important is that it falls within this broader scope of my research. And the broader scope of my research is-- what you're here for today-- talking about situating bioethics on the margins, which centers vulnerable populations within bioethical discourse.

And the specific vulnerable population that my book focuses on is Black women within the rural Southern United States. And this project examines the story of Black women's health crisis and Black faith communities using the rural Southern Black Belt as a case study.

So as a religious social ethicist whose work lies at the intersection of bioethics, gender, and theology, I find myself constantly in conversation with two different sets of colleagues. So on one side, I have my colleagues with whom I sit on a local hospital ethics committee. And so it's comprised of clinicians, bioethicists, those who teach-- conduct research in the biomedical sciences.

And then my second set of colleagues with whom I engage are those that fall within faith communities-- local faith communities and the field of religion broadly. So those are the theologians, pastors, and spiritual caregivers, for instance.

Now, with these two sets of colleagues, I talk about the same bioethics issues, but, of course, with a different emphasis. And we'll get into this as I go on in the presentation.

So today, I am delighted to welcome you on my daily journey of talking across fields, bridging ideological and philosophical spaces between colleagues. And what this journey looks like is right here. It looks like these train tracks, right. So at times, they're parallel. And then at times, of course, they're intersecting, overlapping. Sometimes we'll be moving in the same direction-- other times, diverging.

So I hope you're ready for this journey. OK? (CHUCKLING) So let's go. Now, when I meet people either within academia or professional meetings or other settings, naturally people will ask me about my work, about my research. And so I tell them, well, my research lies at the intersection of bioethics, gender, and theology. And I usually get this look. There's a look in the eye. There's a gleam. People start to get excited.

And then they begin a conversation about disruptive technologies within the biomedical sciences, such as artificial intelligence and autonomous systems that are basically changing the way that we work and think and play, and also changing how medical professionals now can use computational models to guide care decisions and explore treatment options for their patients.

And then people, some-- some-- often bring up other exciting disruptive technological innovations, which we all are clear our laws and our ethics cannot keep a pace with, right? So they bring up things such as genetic engineering, cloning. And many like to talk about the power and possibilities of genetic testing.

And as significant as all of these issues are, I always have to kind of reel things back in, dampen a bit of the excitement, and bring the conversation back to this notion of "situatedness." Because for me, it is important that bioethics is situated, and situated particularly within the margins. And why is it that it's important for bioethics to be situated on the margins? The reason is because of what takes place when this happens.

You see, when bioethics is situated on the margins, it centers vulnerable populations in the mainstream bioethical discourse. And when you center vulnerable populations, you actually change the direction of the discourse. Therefore, the questions and conversations about the disruptive technologies, for instance, it changes a bit. So the conversation will then shift to how the distribution of the burdens and benefits of these wonderful technologies will affect communities of vulnerable persons.

And another thing that happens on the margins is that we center embedded and embodied persons instead of the detached, unencumbered, rational, autonomous agent that is traditionally the subject of mainstream bioethics. Also, on the margins, medical professionals can more easily see that they are treating an embedded patient who comes with attachments, familial or communal, that really do matter and actually have a bearing even on health care decisions, as well.

So the challenge that we often face within bioethics is that there are just so many exciting and intriguing phenomenon in the mainstream discourse regarding these technological innovations, as well as the controversial issues, such as end of life-- euthanasia, abortion, for instance. But the limitation, often, of these conversations is that, while they can include vulnerable individuals, they do so at a level of abstraction that is common to moral philosophical discourse and without the level of contextualization that is needed to attend to social justice.

So what often is neglected in bioethics is a sustained and meaningful engagement with social justice-- not to say that it does not happen. It does happen. But a sustained and meaningful engagement with social justice with respect to populations of vulnerable communities within society.

And why this is significant is because the reality for the poor and marginalized in the United States is that they exist in places and geographies of political, economic, and social differences that not only shape access and opportunity, but also shape identities, bodies, and cultures. So on the margins, the moral subject is necessarily particular, relational, concrete, and contextually embedded. That is extremely important.

And because mainstream bioethics has traditionally often excluded marginal voices-- and some of the marginal voices, of course, include LGBT individuals, women, racial and ethnic minorities, which include Latinx, Native American, Alaska Native, Asian-American-- so because these marginal voices have often been excluded, critics have argued that it has raised validity problems for bioethics.

So critics will ask the question, does mainstream bioethics have external validity? Or is it just an invigorating intellectual exercise? I actually think it's both. And both are meaningful. That bioethics does have external validity is clear for me. It does. However, it has validity in as much as it also can situate itself to attend to social justice for vulnerable populations-- or in other words, in as much as it can situate itself on the margins.

See, I came to bioethics through the margins. I came through my work as a former Associate Director of Education within the National Center for Bioethics at Tuskegee University. And this was in rural Southern Alabama-- Black Belt. And the Black Belt is characterized by economic, social, and health disparities.

So using the vulnerable population of African-American women within the context of the rural South as our case study, today we are going to talk about what bioethics on the margins looks like. So the regional characteristics of high poverty, low educational attainment, limited economic opportunity, and poor health within the rural Southern Black Belt fall disproportionately on African-American residents.

And poverty in the Black Belt has not only a racial- but age- and gender-specific characteristics. For instance, Black women are among those with the highest poverty rates, are the most food insecure-- which means they lack consistent access to nutritious, affordable food-- and they're embedded in systems that are historically characterized by health disparities, racism, classism, and sexism.

So let's take, for example, throughout history, Black women's bodies have not been deemed worthy of protection, care, or respect. They bore the burden of chattel slavery-- chattel status during slavery.

And their bodies were used for the advancement of science and health of more worthy men and women in society at the time. Consider J. Marion Sims, the "father of gynecology," and other clinicians during this time-- this was in the 1800s-- who understood Black women's bodies to be mere clinical material from which to extract reproductive knowledge and to test their medical innovations on.

Also, Black women's voices have been historically absent from significant conversations within society-- conversations that have been able to determine life chances and allocation of various resources that support human flourishing, conversations about whose bodies are worthy of care and protection, and what we owe one another.

So the legacy of medical apartheid that started during slavery and has been historically experienced by Black women in America continued beyond Marion Sims and his colleagues. And it continues even in the 21st century.

The scientific literature substantiates that racial and ethnic differences in health treatment and outcomes persist in multiple studies, even after controlling for differences in insurance status, income, education, geography, and socioeconomic status. So it's important to note that the health outcomes go beyond medical phenomenon to broader social factors that influence health as much as the availability and quality of health care.

Therefore, the persistent suffering from poor health outcomes is beyond personal responsibility in connection with behavior disparities that people may witness amongst vulnerable populations. The behavior disparities actually have a context.

And part of this context includes these broader social factors that influence health. And they are exposure to the stress of discrimination, compromised access to nutritious food in areas where the majority of the population experiences food insecurity, and neighborhood condition where the built environment is not conducive to promoting healthy lifestyles, just to name a few.

So as we examine bioethics on the margins, what it looks like in this case study within the rural Southern United States, I want to just talk about a few statistics that demonstrate the persistent health disparities that continue to shape the life experiences of Black women in this context.

I'll only focused on three areas where the health disparities are among the starkest. And those areas are HIV and AIDS, Black maternal health, and mental health.

So in both HIV and AIDS categories, Black women outpace white women by at least a factor of four. African Americans, although we're only 12% of the population in the US, account for over 40% of HIV diagnoses. And likewise, among women who receive HIV diagnosis, 61% are African-American and only 19% are white.

So according to the Centers for Disease Control and Prevention, the root of these dismal statistics lie in stigma, fear, discrimination, and homophobia, which can put African Americans at a higher risk for HIV. Likewise, the factors that are associated with poverty, such as compromised access to quality health care and housing, are also significant as African Americans suffer disproportionately from higher poverty rates in the United States.

So these factors contribute to the explanation of worse outcomes of the HIV continuum of care. But the statistics are just as dismal for Black maternal health. Black women seem to have been left behind with respect to improvements in obstetrical and neonatal care.

Lewis et al. stated there in the United States, maternal mortality provides one of the starkest examples of women's health disparities. And the fact that Black women experience more severe maternal mortality and morbidity than white women is well-documented. The Black infant mortality rate is over twice as high then as for whites.

And African-American women are four times more likely to suffer pregnancy-related mortality than white women. And Black women also have a 70% higher hospitalization rate for pregnancy complications than do white.

Likewise, the mental health statistics demonstrate the extent of health disparities regarding this population. The US Department of Health and Human Services Office of Minority Health draws correlations between poverty and psychological distress. So African Americans living below the poverty level are three times more likely to report experiencing psychological distress than those that are twice as much above the poverty level.

So regarding the relationship between stigma and utilization of mental health care, studies show that young women are at risk of depression. And those from an ethnic minority group are particularly unlikely to get care.

So beyond the practical barriers, such as lack of insurance and transportation, that hamper impoverished ethnic minority women from seeking mental health care, the stigma regarding mental illness also acts as a hindrance to women accessing these services. Thus, the association of stigma and mental health disorders is a likely contributor to explaining the disparities in mental health care, as well.

So these rural Southern Black women in our case study are rendered vulnerable because of their gender, class, race, health, and moral status, all of which have a bearing upon their social, economic, and political status. So at this point, I think it's important to say a bit about this notion of vulnerability, right-- particularly as it relates to bioethics on the margins. Because as you may already be rightly thinking, vulnerability is not a phenomenon that's new to bioethics. It has always been implicit in bioethics, particularly since the earliest attempts to regulate medical research.

So vulnerability has been associated, though, with a lack of autonomy within bioethics. And this prioritization of individual autonomy has truncated the applicability of the concept with respect to social justice.

Now, the significance of emphasis on vulnerability within bioethics on the margins is that it yields perspectives beyond the traditional autonomy model. Since society is more than a mere aggregate of equal, autonomous individuals, and is actually comprised of relational persons who are embedded in institutions and relationships, people are vulnerable due to this, of course, dependency and interconnectedness, right?

And Henk ten Have argues that the concept of vulnerability can not be fully understood with in the framework of individual autonomy that dominates mainstream bioethics, for it is often not solely the person who is vulnerable. Rather, their vulnerability is created through the social and economic conditions that they find themselves living in.

For instance, Iris Young argues that people suffer disadvantage because of our norms of distinction, privilege, hierarchy, status, and authority that are built into our everyday practices and society. And of course, these norms influence power relations and how groups are treated within society.

Thus, vulnerability in this sense has also been an indicator of social inequality. And the social and economic conditions sustain vulnerability of groups within society. Therefore, ten Have argued that, to improve health, it is, then, important to analyze mechanisms and conditions that produce vulnerability.

So you remember these train tracks, right? Well, now I want to basically invite you into what a conversation with my two sets of colleagues looks like with respect to this case study of the vulnerable population of Black women in the rural South. OK?

So first, we're going to examine the ethical issues that would be the subject of the conversation with my colleagues who are the bioethicists, clinicians, practitioners within biomedical sciences. Given the background information of the case study that I've just shared with you, here's a bit what that conversation with sound like.

So we know that bioethics has been about, in part, constructing a framework of universal patients' rights and protections, and the rights and protections of research subjects, in part. However, on the margins we are examining the situatedness of bioethical concerns and experiences in local contexts-- for example in our case, the rural South.

So because the universalizing and abstract tendencies of mainstream bioethics discourse limits the field's ability to engage the lived worlds of diversely situated social groups, particularly those that are marginalized. So by situating itself on the margins, bioethics can more fully engage the rural health care systems that rural disadvantaged Black women find themselves trapped in.

However, the primary focus of bioethics conversations with respect to health care have been the non-rural, large health care facilities. And rural health has not traditionally been among the highest priorities of bioethical discourse or practice. But this, of course, mirrors the relative lack of attention to rural health care generally within the US medical system.

So though the problems associated with health and health care among rural poor are well-documented, I'll talk about just a few of them-- what they include. So just like underserved urban areas, rural populations have a higher proportion of vulnerable residents, particularly children and elderly, who require more health services, have a higher incidence of chronic disease, and higher infant mortality, right.

And then secondly, rural poor also have limited availability of health care services. So fewer health care providers are available per capita. So there are fewer doctors, nurses, social workers, dentists, fewer home-based providers and mental health professionals.

And then, of course, there are these cultural and personal values that affect the recognition of illness. So during my time in the rural South in the Alabama Black Belt, it was very interesting because, for some people, illness only occurred when they were unable to work-- when they were unable to get up and work. So these cultural and personal values do affect the way people perceive not just illness, but perceive when health care should be sought out, acceptance in attitude toward caregivers, as well, and the decisions that are surrounding their medical interventions.

So in addition to the limited accessibility to health care services due to distance in rural areas, the dual and overlapping professional patient relationships is also a problem in smaller rural communities. And I witnessed this a lot within the Black Belt, because being a part of a smaller community for the health care professional, of course, can create these issues of confidentiality and boundary-related ethical conflicts due to your overlapping, multiple roles within that small community. Right?

And so lastly, of course, as you probably already can just imagine-- caregiver stress, right. It's an issue due to professional isolation, overlapping relationships, and just immense clinical responsibilities because of just the region that you would have to serve.

So because we deal with culturally and contextually embedded relational moral agents on the margins, bioethics can, then, yield practical solutions to practitioners who confront diverse clients and problems that are associated with things like geographical location, for instance.

So what? Right. So why is all this important? I love asking the "so what?" question. Why is it important? Well, the significance of the ability to understand and examine elements of situatedness, such as identity, place, and practice, can actually strengthen the impact and support the validity of bioethics.

So in essence, situating bioethics on the margins is an important step in a bioethics that is centered on social justice. Because bioethics on the margins seeks to understand difference. It seeks to grapple with the non-unitary, real, and embodied subjects. And it takes seriously the ways in which places, identities, bodies, and cultures are all integrated.

So now let's shift a little bit and get onto the other track, all right? So we've dealt with my set of bioethics colleagues. So now I want us to shift. And we're going to get on a parallel track. And so we're going to look at these ethical issues that are the subject-- that would be the subject of my conversation with my other set of colleagues. And this brings us more-- back into the realm of my book project, OK?

And so this set of colleagues that I'll focus on right now, particularly those in the faith community. So after all of the background information within this case study, the ethical issue for this second set of colleagues has a different emphasis, as you would imagine. So talking about folks in the faith community.

So we know that at the margins, our concern is with social justice, right? But how do we do justice within or call things like religious institutions to account for their lack of doing justice with respect to vulnerable populations?

It's a very important question, because within the US, we know there's been this longstanding relationship between religion and health. And particularly within the Black church, this relationship has persisted not just because of these common ideological factors, but the practical experience of marginalized Black life in America, particularly early in the history of the US due to racial discrimination and de facto segregation, which closed off many mainstream institutions from African Americans.

So then the Black church had to fulfill not only this spiritual role that was expected within Black communities, but it had to fulfill very practical roles as well. For example, churches have offered free health clinics. And at one church that a colleague of mine was studying, there was actually a health clinic within the church itself. The pastor was both a medical doctor and a pastor. So that church actually housed the health clinic itself.

Churches also have sponsored health fairs, where individuals within the community can get, say, free blood pressure checks, eye exams, dental exams. And they can also have consultations with health care professionals. And, as you can imagine, within isolated, rural communities such as the Alabama Black Belt in many areas, you can see how important this is, right? Because within these consultations, some individuals were also able to receive referrals to community health facilities whenever a follow-up was needed.

So since its inception, the Black church has held, among its goals, not just this spiritual, but the social, political, and economic well-being of Black people. And Rowland and Isaac-Savage cite that the Black church is actually the one institution in history of the US that has consistently served the interests of African Americans.

Now furthermore, it has had as one of its own its goals, however imperfectly played out-- because I've really watched it played out on both sides, even imperfectly-- so it's had as one of its goals the well-being and health of Black people. So churches also play this important role in shaping the beliefs that either promote or discourage healthy behavior and influence what parishioners believe about who or what is in control of their health.

So these faith communities have historically partnered with, say, public health researchers and practitioners in health promotion and education as informal service providers, and sometimes as entry points for formal services. So by partnering with churches, the social service and health care agencies reach goals of servicing communities, say, more broadly-- specifically, populations that suffer disproportionately from health disparities.

So while writing my first book, a significant fact that I learned about Black faith communities is that they claim to serve as a refuge for millions of Black women burdened in ill health and lack of access to care. However, these institutions are in need of a re-evaluation of traditional ethics and the ideological grounding that continues to hold women in patterns or practices and beliefs that can be destructive for their mental, emotional, physical, and spiritual well-being.

So many congregations have, as a part of their mission, of course, care for the sick, right? And some actually institutionalize this commitment formally in health and wellness ministries.

However, like the membership of these congregations, the majority of the health and wellness ministry leadership are women. And as with society, women's work in the church is often undervalued and overlooked.

And though these faith communities perceive themselves to be a refuge, they ironically have and can continue to serve as a source of diminishing women's well-being through destructive beliefs perpetuated about women's roles in society and beliefs about the use and control of women's bodies, as well as theological reinforcement of women's subjugation in society.

So among the ethical questions that should be raised with respect to this set of colleagues, first, given the historical link between religion and health within Black faith communities, what is the role-- or what should be the role-- of the Black church in the current Black women's health crisis in the United States? What theologies, values, and practices are destructive of Black women's freedom and autonomy?

Which ideological and theological understandings reinforce Black women's subjugation within church and society? And in what ways can these women, as moral agents, not just resist, but alter theology and practices and shared communal meanings in a way that contributes positively to Black women's health and well-being?

So the rural Southern Black women's experience is actually part of a larger story about social injustice in America. And the health crises of these women is, of course, as I said, exacerbated by region and rurality.

So in the everyday experience of many of these women, the destructive phenomenon is actually taking place-- coalescing. And those phenomenon are, first, the continued devaluation of women's experience throughout institutions in society; secondly, the formidable power of race, class, and gender in America; and then lastly, the looming threat of the repeal of political gains that have been made with respect to access to health care.

So the convergence of these occurrences for many women means the difference between either survival or utter demise. And within the highly racialized environment of America, examining the intersection of the health of Black women yields insights that speaks to something larger.

And that's the plight of women globally. Because Black women in the rural Southern United States, just like women in the Global South and other parts of the world, they're making a way through and in spite of these oppressive forces and working towards transformation in their communities. Their leadership, resilience, as well as resistance, often through and sometimes in spite of their faith communities, is actually holding together communities in the face of disempowering forces of poverty, food insecurity, and lack of access to quality health care.

So because bioethics at the margins centers concrete communities of persons who are embedded in social, economic, and religious institutions, examining the ethics of institutions that have a bearing on the health and well-being of vulnerable populations is also a part of what it means to do justice within these communities. Thank you.


CATHERINE BREKUS: So we have some time for questions. We know that some people will need to leave for 2 o'clock classes. But we can stay as long as 2:30. So I think that the preference is for people to speak into the microphone for the benefit of the recording. So I will bring you the mic if you raise your hand.

AUDIENCE: Thank you so much, Professor Wilson. I just had a quick question about, I guess, particularly about how you interact with health care practitioners as a community. And I'm just wondering if the goal of promoting a more situated bioethics is that practitioners will approach their patients with a kind of knowledge of their situatedness coming in?


AUDIENCE: Or that they will learn the ways the different facets of a person's identity that can affect how they would receive their health care, and to just not make any assumptions?

WYLIN D. WILSON: OK, yes. OK. [CHUCKLES] Good. That's a good "both, and," right? I'm very much interested in the health care practitioner. And by the way, I have to say this. This is my former student here. And she has been accepted into medical school. [LAUGHS] Okay, so I'm just so proud of her. So I just want to say this. [LAUGHS]

So this is an appropriate question. So for me, I'm very much interested in the notion of situatedness and for the health care practitioner to grab hold of that, understand that, how that will and can affect the care of the patient, instead of just treating the patient as if a person comes without like a clean slate, right? No attachments.

Because it's interesting sitting on the ethics committee at the hospital. So many of the cases that we talk about have to do with situatedness of the patient themselves, right? All of those different people in their lives, whether it be their family-- sometimes it's even in the religious community-- who come in and have some kind of bearing on the care of that individual. So that's why to me this notion of being situated is so important, and particularly for the health care professional, as well. Yes. Yeah. Thank you. Great question.

AUDIENCE: Yeah. OK. Thank you for your talk, which was really enlightening. And as someone with not a lot of background, I had some basic questions that I hope I could just ask you to speak more about. Because as you were saying at the end of your talk, I think you're exactly right, that these questions that you're putting together through your intersectional approach, they're really bigger questions about gender globally, historically, et cetera.


AUDIENCE: So I guess this is an opinion question. So you've been in the field. And you've been working in these communities-- these faith communities. And you ask this really important question, which is, what should be the role of the Black church in the current state of Black women's health crisis in America?

In your opinion, in your view, do you think that those institutions think they should have a role in that conversation? And if so, what do they imagine their role to be? And what might it be? Do you think it's an issue of trying to get people to recognize simply that they have a role, that they play a role in individual women's lives? Not simply an institutional, but on the individual within the institutional basis. Or do you think it's more that there's resistance within the institution? Or maybe it's a combination of those things.

WYLIN D. WILSON: Yeah. So it's a combination for sure. So one of the things that was interesting, when I first began working at the Bioethics Center down in Tuskegee, I was new and in my office. And I start getting these phone calls from people in faith communities saying, hey, my church wants to start a health and wellness ministry. What resources do you have? And I was like, oh. OK. I'll take down your information. I'll get back right with you on that. [LAUGHS]

And because I kept getting these calls and people within the community were also asking, OK, look, because there's so many people that are sick in the congregation-- but then not only in the congregation, but just in the surrounding community-- there's really no way that they can ignore kind of what's going on. So some of the congregations were literally forced to deal with it because they have people sitting in their pews who are suffering from chronic diseases.

And so some of the churches are very much aware that, oh my goodness, we have to do something. And they feel a responsibility, right. Sometimes that responsibility stems from this kind of historical understanding of the role of the Black church as being more than just a spiritual care provider within a community. So some churches take on that onus of, OK, we have to do more. We don't just care for the spirits. We have to care for the mind, body, and soul.

When I was doing interviews within the community, when I'd often ask about, as either parishioners or the leadership, I asked them about health, and what does health mean to them? And it was always mind, body, and spirit. It was never just spirit.

So it was interesting. So a lot of people do have this understanding of this notion of, yes, so you're caring for the whole person. You can't leave out various facets of the whole person.

And another thing that I think is extremely important-- and the reason why faith communities need a bit of help in dealing with these issues-- is because, in some communities, because of, one, the lack of mental health professionals within the community, and then because of stigma, a lot of times people just have the faith community, that faith leader as the mental health professional. And we know how dangerous that is. They're not mental health professionals.

And so what's important is to help these communities-- faith communities, in particular-- to understand, if they are going to delve into taking care of mind, body, and spirit, then you understand boundaries-- proper boundaries for what they can and cannot provide if they're not clinicians, right. And then how to actually do that, how to make referrals.

There was a local diabetes support group within one of the congregations that I just loved. I loved the leader. She was a sweet, little lady who started this support group. And because of how effective it was-- she, herself, was a nurse-- and so she brought in all kind of health care professionals and whatnot to actually help people to understand how to manage this disease.

And so what happened was, because it was so effective, doctors actually started writing a prescription to their patients to go to this diabetes support group in the local church down in the Black Belt. So things like that, I think, are extremely important, to look at on both sides for congregations who were just kind of pushed into this, but for also those who have serious, sincere responsibility in their perception of who they are, kind of thing. Thank you.



AUDIENCE: Thank you so much for your talk. There's so much to unpack here. I was wondering if you could speak a little bit about how you see bioethics being more proactive, maybe, in going out into these communities on the margins? You spoke a little bit about how bioethics is traditionally practiced in hospitals, in academic medical centers, in these ethical review boards. And I was wondering if you saw any encouraging programs or practices where bioethical practitioners were going out and speaking to these providers in rural communities and helping them grapple with some of these ethical issues?

WYLIN D. WILSON: Oh, yeah. So through my work down at Tuskegee in the National Bioethics Center there, it was so rewarding because of that. So because we were in this context of the rural Southern Black Belt, it really shaped our bioethics, our doing of bioethics.

So we had programming. We had seminars for people in the community on not just on chronic disease and the role of faith communities, but just issues that the community was grappling with. I remember one of our most popular seminars was the one on medical marijuana. And so we had people from the community to come in-- as well as plenty of college students that (CHUCKLING) came in, as well.

But my point is, what we did is, we'd try to provide educational seminars for people in the community. And we would go in the community. We'd have programming for young people in the community, as well.

One of the things that I really enjoyed, I had a bioethics internship for high school students at the Bioethics Center. I brought them into the Bioethics Center. And our focus was youth violence prevention because, believe it or not, unfortunately, a lot of problems that have traditionally been seen as "urban problems" are now very much rural problems, as well. So we had the problem of youth violence even in the rural areas.

And so the students came in. And we literally unpacked the concept of violence and nonviolence, and what does it look like to deal with social media and violence or bullying in social media? So it was really wonderful. We were able to really unpack some very real issues for people in the community. And so for me, I think that that is the best way to do bioethics, is being on the margins actually allows you to deal with so many very pressing issues for people within the community themselves. Thanks.

AUDIENCE: So, thank you for your talk.


AUDIENCE: A lot of insights and questions that I have that were bubbling up. But one question I thought I wanted to ask was, do you see a connection between the Black women's health crisis and intergenerational trauma?


Oh my gosh, that's an excellent question. Hmm. So I'd say, yes. And the reason why I can say yes is, particularly if you look at, I'll say one of the communities that I remember working with, particularly in Tuskegee, of course, you know that's the site of the US Public Health Service Syphilis Study. It's a misnomer to call it the "Tuskegee Syphilis Study." It was not the Tuskegee Syphilis Study. It was the US Public Health Service Syphilis Study.

And one of the things that we did is, we worked with the family members who were descendents of the men that were involved in the Syphilis Study. And we had to literally have healing sessions. We brought in clinicians, mental health practitioners because of the trauma.

So the people that we were dealing with were great, great, great nieces and nephews of the men who were involved in the Syphilis Study. Some of them were grandchildren of the men that were in the study. But there was still so many open wounds, so many questions, so much anger.

And actually, the stigma-- because syphilis is a sexually transmitted disease-- many of the family members, particularly the women, confided in us and said, look, we're still dealing with the stigma of this. My grandfather had syphilis. And so it was really interesting to witness intergenerational trauma through that. That's just one example.

And so I do think it definitely does have a bearing upon particularly mental health. Yeah. I mean, there are a lot of things that we don't attend to even in our own family histories, right.

I think we can all probably just-- you just don't even have to take minutes, you could probably take a few seconds-- and just think within your own family history some of the trauma that your grandparents or great-grandparents have experienced, and then look at ways that you saw that lived out. The trauma was lived out in various ways. And you could probably even see it still being lived out. So, yes. I would say, yes.

AUDIENCE: I was going to say, it's heartbreaking to watch it continue generation after generation for a number of factors. But mental health is a big stigma.


AUDIENCE: But to look at chronic diabetes, obesity. I mean, it's just a number of issues that continue to follow us, chase us, generation after generation. So I just wanted to raise that. Thank you.

WYLIN D. WILSON: Thank you. Excellent question. Thank you. Thank you. Thank you.

AUDIENCE: Thank you so much, Wylin. That was wonderful. I wondered if you would comment on a policy issue that we're currently dealing with. And that is people's access to Medicaid. We know that the root cause of so much of this is poverty. And Medicaid is the one medical benefit that can help poor people.

And we've had such a regressive attitude toward states accepting even what they could. And I wonder how you see that and the whole policy issue for particularly low-income Blacks and whites who are affected by that.

WYLIN D. WILSON: Yeah. No, you're so right. It is an issue that-- that issue crosses racial lines, for sure. Of course, being in Alabama one of the things that we constantly had to deal with was the fact that there would be no expansion of Medicaid there.

And [SIGHS] just watching within the community, what happened was, what faith communities did is they were being we were trying to be as proactive as they could in that instance. And so there was some activity of people trying to actually say, OK, look, this is something that's so important because without that basic access, it just exacerbates our health challenges, our health crisis within the community itself.

So it's so important. I just cannot even express how important of an issue that is. And to be in a context where we could actually see communities and individuals suffering because of just the lack of basic access really made it very real to me in a very real way. It put the real face to the political issue, right. Sometimes we get caught up [CHUCKLES] in the politics. But they're faces.

AUDIENCE: I have a question about social justice and the fact that students here and all of us who are interested in this issue, that that kind of advocacy and activity about something that's so present politically now could make a difference. Because I think many people who aren't affected by it just think, well, it's too bad that states have taken that attitude toward a federal benefit that could help their populations. But activism and doing more about that in the political arena is so important, I think.

WYLIN D. WILSON: Yes. No, thank you. Absolutely. Thank you so much. Yes.

AUDIENCE: So thank you for your talk. So food is a medicine. But food can also kill you. So I'm just wondering, what do you think the role of the Black church should be in food politics and nutrition politics?

WYLIN D. WILSON: Excellent question. One of the faith communities that I worked with-- actually, it was one of my favorites because I am truly a farmer at heart. All of the people that know me-- [LAUGHS]

I told everyone. I said, look, you guys. At my old office, I said, let me tell you something. I said, any minute, I will just put on my overalls and I am out of here, going to get into some dirt to grow something.

But so I love this one church in the local community because, actually, they had a parish nurse ministry. And so what these parish nurses did is, they took on the problem of childhood obesity. And actually, I sat on their task force. They were awesome women. I swear, these women in these communities are amazing.

So they established a task force to deal with childhood obesity. And through our meetings and conversations and gathering statistics and whatnot, there was a grant that was submitted through the parish nurses. And they received funding.

And so what they did is, they established a community garden. And from the garden, they actually would have the children come in. And they teach them how to prepare the food and whatnot. Because unfortunately, nowadays, there are a lot of children who just really don't even know how to cook just simple things-- vegetables and whatnot. So they were really dealing with very serious issues within the community of just even preparing healthy meals or healthy foods.

And so one of the ways that the Black church is actually getting involved in food politics is kind of through very practical means of dealing with issues like childhood obesity and starting community gardens and actually doing awareness and advocacy within the community.

There was a woman within the community there who was very active in promoting healthy eating. And at one of the churches-- wow, I'll never forget this-- I actually went to church, and there was a meal afterwards. And there was no fried chicken.

And now, I'm Southern. And those of you who are Southern are understanding how serious this is. There was no fried chicken. And I was just outdone. I was like, baked chicken? No way!

And there was a fruit salad that someone had painstakingly cut up all of these pieces of fruit and made a huge fruit salad. And then there was a salad. And I know this probably sounds very simple. You're like, so what? This is the rural South. I'm telling you, to see a fruit salad, to see no fried anything-- we fry anything. (LAUGHING) We will fry ice cream and butter. So I'm just saying, that was huge. That was huge.

And so just on a very practical level, a lot of these congregations are basically dealing with these issues on a very practical level. So it's awareness, education, awareness, but then kind of changing practices, which I think is one of the hardest-- one of the hardest things to do, right.

Because you know folks were mumbling about the fact that there was no fried chicken. I mean, you know what I'm saying? I mean, that's just a reality. But yet, that was just a small step in what they could do.

AUDIENCE: It sounds like we kind of keep coming back to kind of identifying and maybe, possibly training and making official a role for community members and religious community members in health behaviors and health care. And I'm thinking of different papers that have come out that show religiosity as positively correlated with health outcomes.

And so this makes me wonder what your opinion would be. Do you think that the health care field-- which, officially, it's a secular field-- do you think that they have a responsibility to promote or to at least support religiosity in religious communities in the same way that we consider nutrition to be a positive health care contributor?

WYLIN D. WILSON: Mm. So that's a very good question and somewhat of a difficult question. Because, well, here's the thing. So health care facilities have a responsibility to promote kind of the participation of religious groups or anything in as much as it is relevant to the patient's care, to intervention, to positive health outcomes. So we have chaplains-- right, hospital chaplains and whatnot.

So taking that to another level, that is very much contextual, right? Because it really does depend on, first, the kind of support that is there for that to happen at the health care facility. If there is support for that, then the actual logistics-- how do we do this? Why are we doing this? And all of the justifications and whatnot.

Because I think it's wonderful. I think that's great. But I think that that, in and of itself, will be something that itself is very contextual, as well, right? (LAUGHING) I keep coming back to situatedness. [LAUGHS] But, yeah. Excellent question, though, seriously.

CATHERINE BREKUS: OK, if there are no more questions, thank you so much, Wylin, for this wonderful conversation.

WYLIN D. WILSON: Thank you.