Abstract

Mainstream bioethics has dealt inadequately with issues of race, gender, and class that intersect and shape the life experiences of vulnerable populations in the U.S., such as Black women in the rural South who have faced bioethical and public health challenges throughout U.S. history. They have suffered from health disparities, challenges to their autonomy, inadequate access to quality health care, biomedical violations, and a healthcare system that has implicit bias and discrimination. Thus, we propose a framework for biomedical and behavioral researchers and organizations who seek to engage, ethically, such vulnerable communities. The goal of this Ethical Community Engagement (ECE) framework is to empower communities, respect autonomy, and address needs of populations that suffer from health disparities. The Tuskegee/Macon County Diabetes Coalition, formed to coordinate and share information promoting healthy living and habits among citizens of this area, is a demonstration of this ECE framework.

Key words

Health disparities, community engagement, ethics, research, syphilis study, bioethics, biomedical ethics

In the United States, the association between population health, the quality of health care received, and status in society is a disheartening reality.1 Furthermore, for vulnerable populations that suffer from persistently poor health outcomes, personal responsibility is often cited as the basis for the challenges they face.2 However, Dayna Bowen Matthew argues that the behaviors often blamed for their health disparities have a context that includes, "exposure to the stress of discrimination, … food insecurity, and neighborhood condition—where the built environment is not conducive to promoting healthy lifestyles."2 Matthew provides evidence substantiating that "racial and ethnic differences in health treatment and outcome persist in multiple studies, even after controlling for differences in insurance status, income, education, geography, and [End Page 91] socioeconomic status."2 This manuscript will use the example of the experience of a specific vulnerable population, Black women in the rural South, to demonstrate the need for an ECE framework. The framework and principles of this ECE are applicable to all vulnerable populations, in as much as these populations are embedded in particular social, economic, and political contexts and have particular identities (ethnicity, race, class, gender) that influence their lived experience.

A historical shortcoming of mainstream bioethics has been its deficiency in dealing with issues of race, class, ethnicity, and gender that intersect and shape the experiences of vulnerable populations; for example, Black women in the rural South, who have faced bioethical and public health challenges throughout U.S. history. Like various vulnerable populations throughout history, Black women have suffered from health disparities, challenges to their autonomy, inadequate access to quality health care, biomedical violations, and a healthcare system characterized by implicit bias and discrimination.212 The origins of mainstream bioethical discourse within Western philosophy contributes to the neglect of intersecting phenomena of race, ethnicity, class, and gender that shape the experience of vulnerable populations within the health care system and beyond. Bioethics conceptualizes the moral agent as individualistic, unembedded in relationships and unencumbered by social, economic, or political circumstances or identities that shape moral deliberations—in theory yielding a generic moral agent. When examining the principle of autonomy with respect to this generic moral agent that is at the center of analysis in bioethics, significant characteristics of the experiences of vulnerable populations go unnoticed. For example, if we consider the experiences of women with respect to autonomy, often what gets ignored is how the principle of autonomy looks different when gendered experience is accounted for. Feminist bioethics makes the claim that women's autonomy is relational. In other words, the generic patient or human subject who stands at the center of bioethical analysis is problematized by feminist bioethicists. This generic human subject, thus, "… abides by norms predetermined by rational abstract deduction,"13[p.166] and her unique characteristics are erased. Feminist bioethicists claim that a person's demographic characteristics and personal identity "… are fundamental to accurate moral reasoning and should not be abstracted away."13[p.166] These features, such as gender, education, class, sexual orientation, religious identity, and the like are understood to have an influence upon a "… patient's medical experience or a doctor's perception of a problem. Avoiding such detail suggests a reduced understanding or less appropriate solution in bioethics."13[p.166–167] Thus, our ECE model is informed by the argument for relational autonomy that will allow clinicians, biomedical researchers and public health practitioners to account for the relationships and cultural contexts within which individuals are embedded that affect health care decisions and health outcomes.

As critics within feminist bioethical traditions argue, moral agents are not "generic" but relational and embedded, and this relationality shapes the moral decisions individuals make, and the way they are perceived and treated within social systems. Thus, when striving to engage underserved communities for research within the context of developing theories intersected with practical programs one essential principle is that of relational autonomy. Relational autonomy is essential because of historical exploitation and discrimination that has aided in the continuation of disproportionate disease [End Page 92] incidences and morbidity rates in women, women of color, and particular ethnic groups and socioeconomic classes.10,1415

Historical ethnic and racial disparities in quality of care within the U.S. are well documented. For instance, African Americans and Hispanics are more likely to report discrimination in medical care than their White counterparts. Furthermore, the literature supports the claim that there is an association between perceived racial discrimination and psychological well-being.1617 There are also racial disparities in the types of services ordered by physicians and medical treatment.1821 For example, "European Americans are five to fifteen percent more likely to receive aggressive treatment,"21[p.214] and death and hospitalization rates are lower among elderly Whites than among elderly African Americans.21 Therefore, we must disrupt mainstream bioethical discourse to address the issues of such vulnerable populations that suffer from health disparities and acknowledge the significance of bridging bioethics and public health in this endeavor. This bridging can take place through a framework of ethical community engagement (ECE) to which principles of bioethics and public health ethics are foundational.9

This manuscript describes the importance of employing a framework for ECE in the work to address chronic disease prevention and health promotion within the shadow of the legacy of racial discrimination, abuse by government and medical powers, and violation of individual rights of vulnerable populations such as Black women within the rural South. The principles delineated here are simply cornerstone principles, significant for laying the foundation for a more comprehensive framework—the contribution of this article is to build on a slowly evolving dialogue that bridges bioethics and public health in the development of ECE. Among the essential elements of a framework for ECE are the following: (1) The nature of the person within the community;22 (2) trust (truthfulness and integrity in research practice are key);23 (3) building authentic relationships (being in and of the community);2426 and (4) intellectual humility,2728 which leads to inclusiveness and communitarianism. The ECE principles are derived from the intersection of three theoretical paradigms which ground this work: asset-based community development theory, feminist bioethics, and community-based participatory research theory. The overarching characteristic of asset-based economic development theory is its communitarian nature and emphasis on the necessity of taking seriously the concerns and circumstances of least advantaged individuals in community while respecting their right to autonomy and control with respect to their own future.22,29 Within such a paradigm, if research and health care within communities are to be sustained, ethical care and concern must be shown for all community members and their input valued, while their ability to understand and articulate wants, needs, and desires is respected. Additionally, feminist bioethics includes fundamental insights regarding the claim that not only are individuals embedded in communities and relationships that have implications for their health and well-being, but that their health and well-being are also influenced by economic, social, and political circumstances, as well as the oppressions they face with respect to race, gender, and class.3031 Lastly, the community-based participatory research (CBPR) method3233 is one way of addressing the issue of trust that historically looms over biomedical research, clinical interactions, and public health interventions with vulnerable populations. It is important to make strides to not deal with vulnerable populations as merely subjects to be studied. Hence, [End Page 93] CBPR emphasizes establishing a partnership with the community in the beginning of a research project, for example, through a community advisory board. However, a more radical shift in perspective is needed that goes beyond the CBPR method. Therefore, the ECE framework calls for a transformation in the way we view research in the first place, to be willing to be in and of the community, such that establishing a partnership is not necessary because we are in authentic relationship with the community; meaning we have been embedded—we are already listening, observing, and participating in the community in such a way that we can understand and articulate its needs, allowing those needs to shape the research agenda.

The most common theoretical frameworks used to guide ethical conduct in biomedical and behavioral research have limitations with respect to vulnerable populations, social justice, and the necessary integration of bioethics and public health to address challenges these populations face. The widely used Belmont Report provides fundamental ethical codes for research conduct.34 However, the history of research within vulnerable and underserved communities, which should have at its core communities as partners, brings challenges and opportunities that necessitate an expanded look at basic bioethical principles. The standard principles emphasized in clinical ethics curricula have a disproportionate emphasis on individual autonomy and the role of informed consent. What is often neglected is a serious, meaningful engagement with social justice and ECE, particularly concerning working with vulnerable populations that exist in the shadows of historical ethical violations such as the infamous U.S. Public Health Service (USPHS) Syphilis Study.35,36 This study's impact is a reminder of how important it is to counter the shadow of discrimination and abuse of power in research with the practice of ECE. This egregious study is often noted for leaving a legacy of mistrust of research and medical practitioners. This mistrust comes into sharper focus by taking a closer look at the history of Black women within biomedical research and their experience of "medical apartheid."9 The term medical apartheid refers to the historical and continued institutionalized disparate treatment and discrimination based on race, ethnicity, and class that characterizes the medical system in the U.S.

Often the stories of Black women in medicine begin with recounting the exploitative medical practices and biomedical research violations of Francis Marion Sims, known as the "Father of Modern Gynecology,"10 who practiced medical apartheid. In the mid-1800s, Sims purchased enslaved Black women in Montgomery, Alabama and performed experimental surgery on them without anesthesia, using these women as guinea pigs to discover medical treatments for White women who experienced life-threatening illnesses. Medical practitioners like Sims could exploit the bodies of these women because their status was that of property to be utilized at the will of White people.

The legacy of medical apartheid experienced by Black women in America continued beyond Sims and continues today, due to discrimination and implicit bias. Notably, persistent health disparities continue to shape the life experiences of Black women. For instance, in 2015, Black women accounted for 61% of HIV diagnoses among women in the U.S. The HIV diagnosis rate for Black women was 16 times that of White women.37 Black women suffer disproportionately from cardiometabolic risk factors (hypertension, resting heart rate, elevated cholesterol and glucose levels, and obesity, which are associated with cardiovascular disease). There is a disproportionate death rate of African [End Page 94] Americans for most cancers, particularly breast cancer in Black women, due to inequities in access to care.11,38 Furthermore, the risk of maternal mortality is consistently higher among Black women than White.39 Black women's health is exacerbated by region and rurality. Black women in the rural South are not physically living in chains as their ancestors did centuries ago. However, they are senselessly experiencing physical pain and death because of insufficient information regarding their rights as patients; suffering from medical abuse from physicians; having insufficient access to adequate insurance and quality health care; and lacking access to full-service hospitals in their marginalized rural communities.

Demonstration of ECE

With a grant from the Appalachian Regional Commission (ARC) through Marshall University, in 2015, the Tuskegee/Macon County Diabetes Coalition (TMCDC) comprised of university researchers and community stakeholders was formed to coordinate and share information that promotes healthy living and healthy habits among area citizens using a framework of ECE. The TMCDC exemplifies a grassroots self-help consortium committed to changing the historical context of chronic disease incidence and management in rural communities. The particular context of the TMCDC is the Alabama Black Belt.

The Alabama Black Belt is characterized by economic, social, and health disparities. Sociologist Andrew Zekeri argues that poverty here has age-, gender-, and race-specific characteristics.40,41 Furthermore, in studies of household food insecurity among women and vulnerable populations in Black Belt counties, Zekeri et al.42 and Wilson and Wilson43 argue that there is a relationship between food insecurity and health status in the Alabama Black Belt, where there are high rates of poverty.44,45

The characteristics of high poverty, low educational attainment, limited economic opportunity, and poor health within the Black Belt fall disproportionately on African American residents.46,4751 Thus, the TMCDC takes into consideration the layered nature of health and chronic disease by involving representatives from the health care profession and beyond—since health is not limited to access to medical care, but includes social determinants of health and upstream social determinants. Medical practitioners are rarely equipped to handle upstream issues. For patients already struggling with sickness or disease, upstream issues, such as living and work environments, can have either direct or indirect ill effects on them. Focusing on managing the symptoms of the sickness and not addressing the environments that contribute to the illness can compound health challenges. However, with coalitions that bring together individuals who can deal astutely with upstream issues, health care providers can make referrals that enable movement beyond symptoms to addressing "causes of the causes." Due to their involvement in coalitions, medical professionals will know, for example, to whom to refer patients who are, for example, living in a building with mold, which contributes to asthma and other health problems.51

Coalition members establish ties with and coordinate efforts among local clubs and organizations, faith-based institutions, schools of higher education, public health departments, and healthcare professionals. Coordination of such groups and outreach can strengthen coalition members' interventions, enhancing the impact of programming. Coalitions take the various assets within the community and use them for health promotion/education interventions, keeping the framework for ECE central to its [End Page 95] functioning. As examples, a local diabetes support group and founding member of the TMCDC began to offer blood pressure checks using the American Heart Association Check, Change, Control model for participants in its monthly meetings; leaders in community-established exercise programs were trained in gentle yoga chair exercises and integrated it into their existing programs for seniors; members of local social service organizations and a collegiate group incorporated yoga exercises into their meetings; and four Walk-With-Ease groups were established to increase physical activity. Each of these activities is led by trusted individuals, who are 'homegrown' and committed to reducing the incidence of chronic diseases in their community. Several of the TMCDC partners initially engaged in individual programming, but, through the TMCDC, an intersection and integration of member activities was created. This expanded the reach and frequency of sharing of health education information in the Macon County area.

Yale University's Community Alliance for Research and Engagement (CARE) and Center for Clinical Investigation (CCI) developed guidelines and principles to facilitate a research partnership between the community and the research institution.52 In their strategy for applying these principles, they argue that institutions should first create an ethical framework. They admonish that, "A set of operating principles must be agreed upon that define the ethical conduct of the research partnership."52 Some of the insights from the principles of CARE and CCI undergird the ECE framework used in this study. For more than a decade, researchers and practitioners have acknowledged the significance of integrating ethics into CBPR.5253 Our work in rural southern communities within the Black Belt confirms the power in bridging bioethics and public health, thereby expanding both bioethical and public health analysis. Insights from the work of Jamashidi et al,25 Bastida et al,32 and Mikesell et al5 regarding ethical considerations within CBPR help to provide the foundation of ECE.

A central feature of this ethical framework is coalitions, which serve as the vehicle for health promotion and education. Coalitions work with health care practitioners, churches, support groups, youth programs, clubs, fraternal organizations, and university programs in health promotion and chronic disease prevention. Anecdotally, the Department of Public Health was experiencing challenges getting information out in rural areas and, due to work of the TMCDC in leveraging community resources, they are now able to reach more groups. Further, the local diabetes support group has started to receive referrals from physicians for patients to attend the monthly groups, and the Alabama Public Health Diabetes Nurse reports an increase in its outreach to rural individuals due to the activities of the TMCDC.

Coalitions are distinct but somewhat akin to the community advisory boards that are central in community-based participatory research (CBPR). Note that CBPR is a multivalent term and its application is varied—CBPR does not automatically include ethical analysis or consider ethical dilemmas in the inception of its use. Thus, a model of ethical community engagement is necessary and can be applied broadly within CBPR as well as social science, behavioral research, or biomedical research. There are various strategies that researchers can employ for enhancing community engagement, improving health, and reducing health inequities of the population under study.26 A well-documented method of engagement is Participatory Action Research (PAR). Gaining steam in the late 20th century and being increasingly used in health research in the [End Page 96] 21st century,26 PAR grew as a methodology enabling scientists to work in partnership with communities in a manner that leads to action for change.

Globally, there are various approaches to such research that fall under the broad category of action research and go by various names: cooperative inquiry, community-based participatory research (CBPR), and the like. A main focus of such research is collaborative practice between scientists and community partners for balancing power relationships that exist between researchers and communities under study.26,5254

Although CBPR is a popular methodology that has gained increasing momentum within public health and behavioral science research, not all scientists are employing it. Indeed, CBPR principles have limitations with respect to ethical challenges in community-scientific institutional relations.3233 The methodology of participatory action research, and more specifically CBPR, is not a panacea—ethical issues still arise with these methods. Some of the ethical issues arise due to structured accepted research practices. While well-intentioned, the researcher sometimes emerges as a benevolent leader instead of a participating member of the community. Thus, a framework that entails ethical principles that can apply broadly for biomedical and public health research is needed to create some guidance and best practices for CBPR, central to which are relationships with community stakeholders.

Foundational Principles within the ECE Framework

Nature of the person in community

The foundation of ECE begins with the concept of the person with respect to health. The focus of mainstream Western philosophy and biomedical science has been on the unembedded, autonomous, rational individual—leaving little room for consideration of relationships that are indispensable to the health and well-being of people in a community.

In the Black Belt, personal interviews and focus groups with laity in local faith communities regarding how individuals understand health revealed that most individuals understand themselves to be relational beings and understand health to deal with the whole person—meaning mind, body, and spirit.53 Since health is associated with the whole person, the understanding is that health is related to the various aspects of community life either directly or indirectly. A community member presented a view of healing that is useful in our conception of health and the nature of persons in community. She argued that healing comes about in a person's life through various means, that numerous factors contribute to a person's healing, and that these factors are found in community. The argument is that healing may be environmental (sitting in the sun, breathing fresh air), relational (engaging in conversation with a loved one or community member that brings about feelings of encouragement or inspiration), psychological (going to a support group or a religious fellowship), or physical (taking medicine that has been prescribed by one's doctor, doing physical therapy, going to an exercise class in one's community, or going to a club meeting or community gathering). Therefore, various community organizations and institutions can serve as sites of health education, health promotion, and chronic disease prevention and be places where intervention strategies can be implemented and tested. Thus, the concept of coalition building is essential to our framework of ECE. [End Page 97]

Trust

Scientific inquiry performed for the benefit of individual and public health is dependent upon fiduciary relationships between clinicians and patients, biomedical researchers and human subjects, or between public health workers and communities receiving preventative measures. The same fiduciary relationships exists between the clinicians, biomedical researchers, and public health workers themselves. A breach of trust within or between either the groups perceived as powerful or vulnerable will create a negative ripple effect throughout an already fragile biomedical "ecosystem" (which includes researchers, clinicians, public health practitioners, volunteers, nongovernmental organizations, laity, families, and other community members). While the powerful groups—clinicians, biomedical researchers, and public health workers—in many cases do not even overlap in membership, the vulnerable groups—patients, human subjects, and communities receiving preventative measures—are often virtually one and the same. Consider the medically underserved patient who visits the community clinic and sees advertisements for clinical trial enrollment. This one individual has membership in three vulnerable groups and chooses to trust the powerful group authority figure sincerely believing they have their best interest at heart. Betrayal of such trust and confidence of those at the vulnerable end of the power spectrum that exists between clinician/patient, bioscientific researcher/human subject, or public health worker/community has devastating impacts on individuals and communities, and can ultimately lead to a general lack of confidence in science and medicine. This lack of trust and confidence can lead to using anecdotal remedy to prevent and treat disease. Even in cases where a clinician intends benevolent deception in order to "protect" the patient or human subject, the deception will most likely be perceived as paternalistic, as the clinician is assuming that the patient cannot handle adverse information, for instance.55 Paternalism robs the vulnerable group of free choice and active participation in their health care. In paternalistic information delivery, vulnerable participants are disempowered, and may become passive participants in their own treatment or maintenance plan.54 If passive participation replaces active participation, patients are less likely to make sustained behavior change.15,54 Additionally, health care professionals are expected to have "respectful, open and honest communication with patients, for instance, when they have made a medical error that negatively impacts the patient."54[p.97] However, this does not always happen for various justifiable reasons.28 Whatever the reason, the breach in open and honest communication can build mistrust between the powerful and vulnerable groups leading to a disruption in service delivery. Truthfulness, which fosters trust and trustworthiness is acknowledged as a cornerstone of self-determination and the patients', human subjects', or community's sense of agency and control.54 Truthfulness helps to diminish barriers between the dominant and vulnerable groups. Even hard truths build trust. Trust builds confidence. Confidence builds self-determination. Self-determination builds self-efficacy in the patient, human subject, or community receiving preventive measures.

Building Authentic Relationships

Sustaining meaningful engagement by the researcher who builds an authentic relationship with the community—in contrast to a pre-formed research agenda that is taken [End Page 98] to the community by researchers—is central to this framework. In building authentic relationships, researchers value meeting both real and felt needs of community members and allow needs to shape research agendas. However, there are challenges to this type of framework.

A challenge that researchers face is the pressure to publish research in order to keep and advance their research careers—a state of affairs often encapsulated in the dictum, "Publish or perish." Professional researchers also must secure funding to sustain research programs—the fact that performance evaluation and rewards are directly correlated with publishing within the researcher's field of expertise and the need to find funding often drive research agendas. Thus, the time and effort that it takes to employ the framework advocated here may seem to work against a researcher's desire to progress professionally or keep a program running.56

Most important is the time-consuming effort of attempting to be in authentic relationship with the community before and beyond the study. Mistrust is created within a community when researchers arrive with a pre-formed research agenda without having built a real and sustained relationship with community members.

Intellectual Humility

This concept of intellectual humility, as it has taken shape in this work, is largely shaped by the mentoring of bioethicist Dr. Stephen Sodeke, who (as part of his work at the National Center for Bioethics in Research and Health Care at Tuskegee University) has taught and modeled a principle of intellectual humility.

Intellectual humility, a consideration for both epistemology and ethics, relates to how we obtain our knowledge and to the beliefs we hold and use to guide our behavior.27 Our receptivity to ideas of others and new evidence are conditions of intellectual humility.28 Principles that are an outgrowth of intellectual humility are inclusiveness and communitarianism. A goal of intellectual humility is to engage the entire community, not just the power brokers. We often go into communities as researchers looking for those who wield power, who can help us meet our agenda; however, it is necessary to make an earnest effort to include all members—those without perceived power and influence are to be valued as much as the community gatekeepers. This may prove a challenge, as researchers tend to gravitate towards those participants who are wellspoken and tend to share the value system of the researcher.

Intellectual humility allows us to be leaders who lead by "stepping back." This type of leadership entails releasing one's grasp of power and allows community members the opportunity to exercise agency; it is giving up some of one's power in order to make room for empowering community members to exercise their agency and realize their power. By doing so, we empower community members, providing opportunities for them to be citizens, not clients, whose dreams and vision for their future are respected. Our role is to ask empowering questions of the community and invite them to address the questions and find their own answers. Asking questions invites participation, instead of giving "expert" answers to what we perceive as their problems.

What is most relevant to intellectual humility is first listening and learning from the community—there is mutual learning in this process. Intellectual humility insists [End Page 99] upon shared governance, transparency, and compassion for others and self. Thus, we emphasize that, as experts/scholars, we do not have all the answers; we have information, training, and a commitment to social justice—but we do not go to communities with answers. We, instead, go with a respect for indigenous solutions to bioethical dilemmas.

Health disparities have historically plagued and disadvantaged people of color.1,12,21,5758 These disparities worsen their vulnerability, limit human flourishing, and serve as impediments to optimal health. A cornerstone of ECE is the understanding that health does not begin or end in hospitals or medical clinics. There are social networks and informal associations within communities that can be mobilized and contribute to a population's health. Thus, development of coalitions that reach beyond medical clinics and research institutions is a desired goal. The result will be research that empowers community members, is transformative, and whose practitioners are committed to social justice. However, these types of paradigm shifts take time. Change may be slow, but every effort made by researchers toward this process of transforming the way we engage communities in our work is a step toward ECE, with the intent to refrain from repeating ethical violations of the past.

Joan R. Harrell

WYLIN D. WILSON is affiliated with Harvard Medical School Center for Bioethics. FAYE HALL JACKSON is affiliated with the Andrew F. Brimmer College of Business and Information Science, Tuskegee University. JOAN R. HARRELL is affiliated with the Auburn University School of Communication & Journalism.

Please address all correspondence to Wylin D. Wilson, Harvard Medical School Center for Bioethics, 42 Francis Ave., Cambridge, MA 02138. Email: wwilson@hds.harvard.edu.

This manuscript is supported, in part, by grants U54 CA118638 (MSM), U54 CA118623(TU), U54CA118948 (UAB).

In addition, we thank Dr. Donald Hill in the UAB Comprehensive Cancer Center, for his editorial assistance.

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Additional Information

ISSN
1548-6869
Print ISSN
1049-2089
Pages
91-104
Launched on MUSE
2019-11-15
Open Access
No
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