Engaging Diversity Article Swipe

Photo by Kimberly Farmer on Unsplash ABSTRACT Recent events have caused the field of bioethics to reflect on its failure to tackle topics tied to structural racism and lack of diversity. We developed a model undergraduate bioethics course to demonstrate the importance of bioethics in diverse communities and encourage students from many backgrounds to consider careers in bioethics. This paper describes our approach to course development, student experiences, and lessons. Acknowledgments: This work was supported by a grant from the Greenwall Foundation. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Greenwall Foundation. INTRODUCTION The COVID-19 pandemic and the racial reckoning following the high-profile killings of unarmed Black people in the summer of 2020 prompted discussion and reflection about diversity – or the lack thereof – in bioethics. Commentators have criticized the field for its failure to tackle topics tied to structural racism and its impact on the health and well-being of people of color. The work of diverse scholars is often overlooked or not identified within bioethics.[1] Conversations about structural racism were taking place at the same time we were developing a model undergraduate bioethics course that aimed to demonstrate the relevance of bioethics to diverse communities with the hope of encouraging students from diverse backgrounds to consider careers in bioethics. Traditional bioethical teaching may seem disconnected from the experiences of diverse students and their communities. Quintessential bioethics issues, like informed consent and advance directives, are predicated on assumptions about how patients access health care and interact with doctors. Those interactions and assumptions may be inconsistent with the lived experiences of students and their families. Housing or structural issues, like the prison industrial complex, are often not addressed in bioethics curricula. In developing our course, we sought to provide a firm grounding in bioethics, while introducing a broader array of topics, highlighting the work of diverse scholars, and focusing more attention on the principle of justice. While one of our goals in creating this course was to inspire diverse students to pursue bioethics, we recognized that most students will not. Nevertheless, we suggest exposure to bioethical principles and analysis would prove beneficial to all students and could lead to positive outcomes, regardless of their chosen careers. We decided to focus on an undergraduate course with the intention of increasing diversity in the pipeline of students considering additional studies in bioethics before applying to graduate school. We started this work in 2019 and taught our first course in the Spring of 2020. We did not anticipate that course would unfold within the context of a global pandemic and a racial reckoning that would bring pervasive systemic inequities to the forefront of bioethical discussions. But those circumstances underscored the need for teaching bioethics in a more inclusive way. l. Core Principles in Course Approach Several core principles guided our course development. First, in addition to identifying topics with greater relevance to diverse communities, we wanted to tap into our students’ perspectives. We explicitly recognized the importance of our students’ lived experiences to our discussions. We invited students to share their experiences, as they felt comfortable, in class discussions and assignments. We engaged the students through short written and oral assignments. We also used peer commentary to develop our students’ appreciation of their own expertise. We acknowledge that, despite our intentions, we did not always meet our goals. We attribute our shortcomings to the persistence of old habits like lecturing rather than inviting more active learning, as well as the challenges of rapidly moving the class online. Second, when we selected course materials, we highlighted the work of diverse scholars in our readings, video selections, and guest lecturers. Given that traditional bioethics discusses diverse communities primarily in the context of scandals like the Tuskegee Study of Untreated Syphilis in the Negro Male, we sought to identify examples of bioethics research that has a positive impact on diverse communities. We asked our guest lecturers to talk not only about their work, but also their career paths and personal experiences, creating additional models for our students. As an extension of this project, we recruited additional diverse scholars to create videos about ten minutes in length that are particularly well-suited to classroom use. The videos have been made publicly available.[2] ll. Course Content We believe that our course material and how it was delivered contributed to our students’ experience in the course. It was critical that students understood traditional bioethical concepts. At the same time, we were expanding that curriculum. Accordingly, we started with traditional bioethics curriculum and readings and evaluated where we could introduce new cases, readings, perspectives, and topics. As in a traditional course, our students learned the dominant bioethics theories and principles and discussed topics like the doctor-patient relationship, rationing, consent, and confidentiality. However, our students also explored the concept of capacity in the context of the criminal justice system and the various ways the private prison and probation industry systemically abuse marginalized populations. Additionally, students learned about the laws and policies surrounding housing and welfare systems that adversely affect impoverished populations and the resulting stigmatization. The COVID-19 pandemic introduced additional curriculum topics including the differential impact of the pandemic on diverse communities within the United States and globally. In this section, we provide specific examples of our approaches, with more detail in the annotated version of our syllabus (Appendix 1) and additional resources (Appendix 2). For course materials, we chose a mix of traditional and contemporary bioethics articles, legal cases, articles from the news, and videos from various sources. These materials exposed students to foundational bioethical materials, while offering additional perspectives for a more complete view that illuminates areas in need of reconsideration, expansion, or change. For example, the first class explored the ethics of doctor-patient relationships by discussing health challenges experienced by Serena Williams during childbirth. Using the counter-storytelling technique developed to illuminate diverse perspectives, students learned about the health disparities that Black women experience during pregnancy and birth across the socioeconomic spectrum and explored the systemic factors that contribute to those poor health outcomes. Students also watched a video, The Sad Life of The Caged Teen,[3] that tells the story of a man who, after his family was killed in what was then the Belgian Congo, was enslaved and put on display in America. It vividly demonstrates how race-based beliefs and behaviors led to persisting systemic disparities. In contrast, traditional bioethics videos including Who Shall Live? Seattle God Committee[4] introduced students to the perennial bioethics problem of rationing, but also demonstrated – visually and through description – the lack of representation in many such bodies. Our students also read the landmark welfare case, Wyman v. James, that established the rule that home visits for confirmation of eligibility for social services are not “searches” under the fourth amendment.[5] The court concluded that these home visits were voluntary because individuals could refuse, even though those who refused such a visit would be ineligible for the needed case benefits. We used this case to challenge students to consider how context can affect our understanding of informed consent and voluntary action. Similarly, students read an article about the settlement of a case following Kalief Browder’s suicide after spending two of three years in solitary confinement in Rikers Island jail while awaiting trial for allegedly stealing a backpack.[6] This case forced students to confront the consequences of removing personal autonomy, as well as issues surrounding racism and mental health. We used a variety of stories to demonstrate how power dynamics and cultural differences in the healthcare, penal, and other systems can impact individuals and disadvantage communities, with long-term, systemic consequences. In keeping with our goal of tapping into students’ expertise, we asked students to select a topic to explore in both a reflective essay and a more in-depth research paper. The topics our students selected reflected issues related to criminal justice, immigration, access to medical care, and discrimination in medical treatment. Their personal experiences and those of their communities informed their selection and analysis. Our students also engaged in structured peer reviews, which, judging from their comments when providing updates on their progress, provided valuable, constructive feedback that informed their final projects. We regularly asked our students to share their findings with the class, which allowed for focused attention on topics that our students considered important and for greater peer-to-peer learning. Finally, we spoke directly about our goals for the course and our desire to support our students in their career goals, whether they were interested in pursuing bioethics as a career. We also asked guest lecturers to talk about their own career trajectories, including challenges they faced, to provide models for our students. Some of our students reached out to us to discuss their futures, seek advice about graduate or professional school, request letters of recommendation, learn more about our work, and ask us to connect them to others. Many of our students already had plans for graduate school, and the small class size may have contributed to their willingness to approach us. Nevertheless, our express invitation and stated commitment to supporting them may have helped our students overcome inhibitions about making requests of us. lll. Student experience We offered the course twice, in Spring 2020 and Spring 2021, through the Honors College at Georgia State University (GSU) in Atlanta, Georgia. GSU is a national leader in enrolling and graduating students from historically disadvantaged populations. Of the 51,000 students currently enrolled at GSU, 68 percent of the students are non-white, 58 percent are eligible for Pell grants, and a majority are the first in their families to go to college. Students graduate at similar rates, regardless of race, ethnicity, or socioeconomic status.[7] The Honors College reflects the broader Georgia State student body. In the first year, the class of 16 included five Black students and four Asian students. In the second year, the class of 10 had six Asian students and three Black students. Students included undergraduate sophomores, juniors, and seniors at GSU, whose majors spanned the health sciences, social sciences, business and technology, mathematics, liberal arts, and arts. These students were intrinsically motivated to take this course ― most of them had an interest in learning more about bioethics. One student stated, “I registered for this course hoping to access material and professionals that could help educate me and provide insight that will improve my own decision-making processes to be more considerate of bioethical dilemmas.” We geared the course toward high-performing students, with the objective of providing students with a better understanding of how bioethics affects their area of study. Unsurprisingly, a number of the students already had plans for graduate or professional school. During both semesters we taught the course, we surveyed the students during the first week of class and after they completed the course providing a $20 gift card as an incentive to complete the survey. We refer to the survey as it was one way to gauge the program’s success from the viewpoint of the students. The Georgia State University Institutional Review Board deemed this research exempt under 45 CFR §46.104(d)(2)(ii). Twenty-three of twenty-six (88 percent) completed the pre-course survey (fourteen of sixteen (87.5 percent) in 2020 and nine of ten (90 percent) in 2021); nineteen students of twenty-six (73 percent) completed the post-course survey (ten of sixteen (62.5 percent) in 2020 and nine of ten (90 percent) in 2021). The lower completion rate during the first year of the course may reflect the disruption resulting from the rapid pivot to online teaching in March 2020. In 2021, the course we planned and taught a hybrid course. Additionally, students were not required to answer all questions, resulting in different response rates by question and by pre- and post-course surveys. The survey consisted primarily of questions graded on a Likert scale, where one represented a strong agreement with the statement, two agreement, three disagreement, and four strong disagreement. Despite not providing an option for “neither agree nor disagree,” our enterprising students found a way to select that option. We saw a positive change between the pre-course and post-course survey scores for the statement, “I understand what bioethics means.” Although students expressed uncertainty in the pre-course survey (mean of 2.5, range of 2-4), student scores reflected an improved confidence in their understanding of what bioethics means by the end of the course (mean of 1.1, range of 1-2). Similarly, students who completed both the pre- and post-course surveys expressed greater confidence that they could “Identify at least three topics within bioethics” (average change of 1.45 from pre-course mean of 2.46 to post-course mean of 1). Although students started with a favorable view of bioethics (pre-course mean = 1.92), their views were more positive at the end of the course (post-course mean = 1.25). We saw similar, small positive shifts in students’ view of the relevance of bioethics to their own lives (+.23), and their communities (+.68), but they started with positive views with little room for additional increase. Students’ agreement with the statement “I could see incorporating bioethics in my career” increased slightly from the pre- to post-course survey (pre-course mean 1.8, post-course mean 1.18). We also asked two open-ended questions: (1) What does bioethics mean to you? And (2) Why do you view bioethics favorably or unfavorably? In the pre-course survey, students commonly defined what bioethics meant to them as involving issues related to medicine, health, technology, and biology. For example, one student said that “Bioethics means to me as ethical issues that arise from medical and/or biological practices and/or research.” Another said, “It has to do with the intersections between ethics, science, and medicine.” Only one student mentioned justice, referring specifically to discrimination. However, in the post-course survey, students’ conceptions of the meaning of bioethics were broader (e.g., “medicine, research, policy, and daily life” and “medical, political, or other systematic treatment of people” “our lives” and “not only . . . the healthcare system, but . . . other systems”). In addition, multiple students specifically referenced justice or equity. For example, one student described bioethics as “the study of ethics issues in cases . . . involving the medical, political, or other systemic treatment of people. The goal of studying bioethics is to learn where these issues and injustices stem from so that they can be corrected, hopefully leading to new guidelines for the betterment of individuals and groups.” They also saw broader application of bioethics principles and approaches. For example, contrast what student F said pre-course (above) with the following post-course survey: “Bioethics means the study of ethical issues emerging in the biological and medical fields of policy. However, bioethics can be applied to any field, including law, policy, research, and/or public health.” Similarly, student N stated, “an aspect of bioethics is present in every community crisis and not only pertains to healthcare. Bioethics ties morals to all parts of the community from law, policing, education, housing, etc.” In post-course surveys, students noted that bioethics can illuminate complex issues with diverse perspectives, helping move society forward. Students’ explanations for their favorable view of bioethics after completing the course also reflect their view of the broader application of its principles and approaches. One student described it as “a useful lens for viewing many societal issues” (Student A); another commented that “bioethics reminds us that situations are multi-colored and -sided, and things are more complex than simple” (Student B). Finally, several students commented on bioethics’ role in bringing disparities and other injustices to light. We are cognizant that we are dealing with a small, self-selected group. However, these responses suggest that our approach to the course opened students’ minds to the scope of bioethics and its relevance to a broader range of topics that are relevant to their lives. lV. Discussion Overall, our efforts to engage diverse students and demonstrate the relevance of bioethics to diverse communities was successful. Working together and taking advantage of our combined expertise enabled us to teach a course that provides a strong foundation in bioethics that considers additional factors linked to profound and disparate health effects. The data demonstrate some evidence of a small positive change in the students’ view of bioethics and its relevance to their communities. The high scores at both the beginning and end of the course probably reflect the selection bias inherent in an elective course. Some of them are considering how to use their new insights in their careers. Because of the dominance of white scholars in the field, we could not rely only on “classic” pieces. We saw the need for a new curriculum as the syllabi we had used for years did not address structural racism or include diverse voices. We did not abandon “classic” pieces entirely, but rather thought about each piece and what other materials could and should be included to expand our understanding. We aimed to add context to the pieces and make them relatable to the students. One of our stated goals was to recognize and empower our students as experts, in part by creating opportunities for discussion and limiting times where we lectured (avoiding the “sage on the stage” presentation style). Our survey results suggest our class engaged our students, but there is still room for improvement. The rapid pivot to online only in Spring 2020 and the decision to offer the course in a hybrid format in Spring 2021 likely led to more lecturing than we would have planned. There was little time to deploy best practices for online learning, and even the best online (or hybrid) courses were disrupted by technological issues. The burdens of the pandemic on students, including physical and mental illness, trauma, loss, and caregiving responsibilities all provided more challenges. We suggest that designing the course to allow students to take responsibility for part of class sessions provides a consistent, more active role that fosters engagement. We suggest having instructors provide the relevant background for a topic to enable the student leading the discussion the following week to prepare. For example, if the first topic of discussion is the principle of autonomy, the professor should start that week’s course addressing the principle of autonomy, what it means, and how it plays a role in society, etc. Based on that and the readings, a student chosen in advance would lead a discussion that stimulates critical thinking and elicits perspectives from their classmates. The student would develop open-ended questions (some of which could be suggested by their classmates) that allow for exploration of the topic, as well as share examples, stories, etc. to help further illustrate the The student may also ask to or take some other approach that they will engage their classmates. This students to during class, them an to their learning, and another for students to work with the In we were in developing an bioethics class that highlighted the work of diverse scholars and demonstrated the relevance of bioethics to diverse students. 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