Engaging Diversity

Abstract

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 topic. The student may also ask classmates to role-play, play devil’s advocate, or take some other approach that they think will engage their classmates. This structure allows students to play different, vital roles during class, gives them an opportunity to shape their learning, and creates another opportunity for students to work with the instructors. CONCLUSION In sum, we were successful in developing an engaging bioethics class that highlighted the work of diverse scholars and demonstrated the relevance of bioethics to diverse students. We share our experience, our approach, and our resources in the hopes that other bioethics teachers will seek to diversify their coursework. We firmly believe such efforts are necessary to broaden the field and create a more inclusive bioethics and, thus, better address the complex issues we face. Our work is simply the beginning, and we will continue to advance these goals. - [1] Clarence H. Braddock, 3rd, “Racism and Bioethics: The Myth of Color Blindness,” American Journal of Bioethics 21 (2021): 28; Jessica P. Cerdena, “Race-Conscious Bioethics: The Call to Reject Contemporary Scientific Racism,” American Journal of Bioethics 21 (2021): 48; Stephen Estime & Brian Williams, “Systemic Racism in America and the Call to Action,” American Journal of Bioethics 21 (2021): 41; Paul Macneill, et al., “Bioethics as Engaged Activity,” American Journal of Bioethics 21 (2021): 64; Keisha Ray, “Black Bioethics and How the Failures of the Profession Paved the Way for Its Existence,” The Hastings Center Bioethics Forum, accessed June 16, 2022 https://www.thehastingscenter.org/black-bioethics-and-how-the-failures-of-the-profession-paved-the-way-for-its-existence/; Keisha Ray, “In the Name of Racial Justice: Why Bioethics Should Care about Environmental Toxins,” Hastings Center Report 51 (2021): 23; Jenny Reardon, “Why and How Bioethics Must Turn toward Justice: A Modest Proposal,” Hastings Center Report 50 (2020): S70; Patrick T. Smith, “Racism, Broadly Speaking, and the Work of Bioethics: Some Conceptual Matters,” American Journal of Bioethics 21 (2021): 7; Yolanda Y. Wilson, “Racial Injustice and Meaning Well: A Challenge for Bioethics,” American Journal of Bioethics 21 (2021): 1; Ruqaiijah Yearby, Race Based Medicine, Colorblind Disease: How Racism in Medicine Harms Us All, American Journal of Bioethics (2021): 19. [2] Bioethics: Inclusive Voices. Georgia State University, College of Law, Reading Room. https://readingroom.law.gsu.edu/bioethics/ [3] “The Sad Life of The Caged Teen | Ota Beng,” accessed June 16, 2022 https://www.youtube.com/watch?v=klql6D3vN2c. [4] “Who Shall Live? Seattle God Committee” (1965), accessed June 16, 2022 https://www.youtube.com/watch?v=FMay5zw1loA. [5] Wyman v. James, 91 S.Ct. 381 (1971). [6] Benjamin Weiser, “Kalief Browder’s Suicide Brought Changes to Rikers. Now It Has Led to a $3 Million Settlement,” New York Times, January 24, 2019 https://www.nytimes.com/2019/01/24/nyregion/kalief-browder-settlement-lawsuit.html. [7] Richard Fausset, “Georgia State, Leading U.S. in Black Graduates, Is Engine of Social Mobility,” New York Times, May 15. 2018, https://www.nytimes.com/2018/05/15/us/georgia-state-african-americans.html; Georgia State University, “Student Success Programs,” accessed June 16, 2022 https://success.gsu.edu/. “2018 Status Report, Georgia State University Complete College Georgia,” accessed June 16, 2022 https://success.gsu.edu/download/2018-status-report-georgia-state-university-complete-college-georgia/?wpdmdl=6472128&ind=1536948724169. - Appendix 1: Annotated Syllabus Georgia State University (HON 4500; Spring 2020, 2021) Through a Different Lens: Examining the Enduring Questions of Bioethics from Diverse Perspective Course Objectives By the end of the course, students will: I. Identify bioethics issues in real-life cases of particular relevance to disadvantagedminority students II. Apply bioethics principles and methods to analyze critically these cases and evaluatepotential solutions III. Study innovative examples of resolving bioethics issues in similar cases and identify whythese examples were successful. IV. Identify potential career paths to working on such issues and the steps to attain them V. Reflect on the relevance of bioethics in their own lives and their communities VI. Recognize the applicability of bioethics principles and methods beyond traditional,explicitly bioethics cases.In addition to the course objectives listed, please share what you hope to gain from this course. ASSESSMENT Reflective Essay and Topical Essay: During the course, you will be responsible for submitting two essays reflecting on and responding to class readings and discussions. You may relate the class readings and discussions in the context of current events or a news story that we have or have not discussed in class. You may also take an opposing view to one or more class readings and discuss why you disagree with the author’s assertions based on class readings and discussion. If you choose to reference a news article or other information in your essay, please submit a copy of the article, or a working link to the article, with your reflection paper. The essay should be 500-700 words, double-spaced, and typed in Times New Roman 12-point font. There is freedom in this assignment to address topics raised in the course that are of interest to you. Do not hesitate to speak with the professors about your topic before it is finalized. Your essay will be evaluated based upon your ability to identify a question raised by the readings, classroom discussion, or current events as they relate to the content of the course, and to address how current law and policy does or does not resolve the question. The essay should be well-written and edited. It will also be evaluated on your ability to express views or ideas in effective ways including organizing and communicating with precision and applying the mechanics of language effectively and with clarity, and attention to detail, grammar and punctuation. Students should use thesis sentences, paragraph structure and transitions. A grading guideline that supplements these instructions will be posted to TWEN. Final Essay: The final essay will be a piece suitable for publication in The Conversation. Additional details are forthcoming. The length will be 1000-2500 word, as required by The Conversation or as professors deem appropriate. ASSIGNMENTS Week 1: Introduction Goal: To introduce students to key concepts and distinctions that are crucial to understanding the existing bioethics literature; to explore how such issues play out in concrete ways via the Serena Williams experience. Read I. Rob Haskell, Serena Williams on Motherhood, Marriage and Making her Comeback, Vogue, January 10, 2018 a. We began the semester with an article that illustrates health disparities Black women experience in childbirth. Serena Williams’ experience emphasizes how cultural difference and racial biases exist at every point on the socioeconomic spectrum. The counter-storytelling technique developed to illuminate diverse perspectives allowed students who were new to bioethics to understand the important impact the field can have on social justice. II. Paul Lombardo, Law and Ethics: An Ongoing Conversation, in Fletcher’s Introduction to Clinical Ethics 3d Ed. (John C. Fletcher, Edward M. Spencer, and Paul A. Lombardo, eds.), Hagerstown, MD: University Publishing Group (2005), pp. 47-55 III. Thomas R. McCormick, Principles of Bioethics, Ethics in Medicine, https://depts.washington.edu/bioethx/tools/princpl.html IV. Daniel Callahan, Bioethics, in Encyclopedia of Bioethics, Rev. Ed. (Warrant Thomas Reich, Ed), pp. 248-256 V. Olivette R. Burton, Why Bioethics Cannot Figure Out What to Do with Race, The American Journal of Bioethics, 7:2, 6-12, DOI: 10.1080/15265160701193567 Watch The Sad Life of The Caged Teen | Ota Benga https://www.youtube.com/watch?v=klql6D3vN2c Week 2: Doctor-Patient Relationship Goal: The goal of this class is to introduce the basic bioethics principles and concepts relevant to the doctor-patient relationship, explore how historic and contemporary treatment of African-American patients differs from these norms and leads to distrust of the medical system, and identify mechanisms for altering this dynamic. Read I. Patricia A. King & Leslie E. Wolf, Empowering and Protecting Patients: Lessons for Physician-Assisted Suicide from the African-American Experience, Minnesota Law Review 82: 1015-1043 (1998). II. Jessica Nutik Zitter, The Never-Ending Mistreatment of Black Patients, The New York Times, June 29, 2019. III. Katie E. Raffel, Anna P. Goddu, Monica E. Peek, “I Kept Coming for the Love,” Enhancing the Retention of Urban African Americans in Diabetes Education, Diabetes Educ. 2014 40(3): 351-60. IV. Anna P. Goddu, Tonya S. Roberson, Katie E. Raffel, Marshall H. Chin, and Monica E. Peek, Food Rx: A Community-University Partnership to Prescribe Health Eating on the South Side of Chicago, J. Prev. Interv. Community 2015; 43(2): 148-162. Watch [in class] I. Monica Peek, Clinical Medical Ethics at the University of Chicago: Applying Medical Humanism in Patient Care (Jan. 10, 2017) https://www.youtube.com/watch?v=ZpppqHJU5Gs&feature=youtu.be II. Monica Peek, https://www.youtube.com/watch?v=OydhbkcMU_g Week 3: Setting Priorities for Rationing Goal: The Seattle dialysis case exemplifies the kinds of decisions that are made in the medical context when first access to novel tech