Engaging Diversity A New Approach to Bioethics Teaching

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.

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[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.

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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 disadvantaged
minority students

II. Apply bioethics principles and methods to analyze critically these cases and evaluate
potential solutions

III. Study innovative examples of resolving bioethics issues in similar cases and identify why
these 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 technologies must be determined, and social values are embedded in choosing who will benefit from them. The setting of priorities among potential recipients of medical benefits is a feature of every health care system; understanding the Seattle Committee process provides the backdrop for discussion and analysis of current and/or future systems, and makes transparent the rationing decisions that are submerged in existing programs, such as the ACA.

Read

I. Trial of Peculiar Interest, Wisconsin Enquirer, May 21, 1842, http://www.newspapers.com/image/37082481.

II. Kristina Cooke, David Rhode, and Ryan McNeil, The Undeserving Poor, The Atlantic, December 20, 2012.

III. They Decide, Who Lives, Who Dies http://www.nephjc.com/news/godpanel (original written by Shana Alexander and published in Life Magazine Nov. 1962).

Watch

I. Who Shall Live? Seattle God Committee, https://www.youtube.com/watch?v=FMay5zw1loA

Week 4: The Primacy of Consent

Goal: This class should introduce students to the primacy of bodily autonomy, both as a legal expectation and ethical principle critical to medical practice. The first two readings will force them to realize that this concept is ancient, not novel, and has been a feature of US law for centuries. The Childress reading puts the principle in the context of biomedical ethics, pitting physicians and patients as candidates for decision making. The case of Sarah Baartman—the woman displayed in public exhibitions as the “Hottentot Venus”—provides an early 19th century example of the objectification of an African woman by Europeans.

Read

I. John Franklin Shields, As to the Necessity of Consent to Rend Surgical Operations Lawful (1900).

II. Pratt v. Davis, 118 Ill. App. 161 (1905).

III. Justin Parkinson, The significance of Sarah Baartman, BBC News Magazine, 7 January 2016 https://www.bbc.com/news/magazine-35240987.

IV. James F. Childress, Consents, in Who Should Decide? Paternalism in Health Care, New York: Oxford University Press (1982), pp. 77-101.

V. Claire Cain Miller, Why Mothers’ Choices about Work and Family Often Feel Like No Choice at All, The New York Times, January 17, 2020.

VI. Wyman v. James, 91 S.Ct. 381 (1971) [discussed in class]

a. This is a landmark welfare case that established the rule that home visits related to eligibility confirmation for social services are not “searches” under the fourth amendment. One line of reasoning emphasized by the court is that these home visits are voluntary, because the visit can be refused. The result of the refusal is ineligibility for cash benefits, but this does not mean that the visit is mandatory, because receiving benefits is a choice. We challenged the students to define consent, informed consent and voluntary actions, and how context can affect these definitions. Reading this case in conjunction with classic bioethics articles and cases on consent allow the students to apply bioethics principles to areas of public policy, constitutional law and public benefits.

Week 5: Criminal Justice and Capacity

Goal: This class will explore conflicts between caregivers and patients surrounding whether we expect patients -- as a condition of consent--to appreciate and understand the reasons for and effects of the treatments offered to them. Patients who suffer from mental disabilities, temporary or permanent, pose special cases, and particular rules apply to those who are allowed to decide for them. Students will also read about the private prison and probation industry. Students will draw parallels to an accused’s competency to accept a plea deal or probation. Students will revisit the principles of bioethics and engage in a dialog on the applicability of these principles to the right of counsel, mandatory minimums, health care standards in prison and the collateral consequences of incarceration. Students will learn of one group working to alleviate collateral consequences and will work in small groups to discuss others, based on principles of bioethics.

Read

I. Paul S. Appelbaum, Assessment of Patients’ Competence to Consent to Treatment, New Engl. J. Medicine, 357: 1834-40 (2007)

II. Benjamin Weiser, Kalief Browder’s Suicide Brought Changes to Rikers. Now It Has Led to a $3 Million Settlement, The New York Times, Jan. 24, 2019

a. We use this story to ask the students to think about the consequences when personal autonomy is removed, and to think about racism and mental health. We discuss this in the traditional bioethics context, but want to underscore the principles and logical reasoning can also be applied in the criminal justice context. Kalief Browder was on Rikers Island jail for three years as he awaited trial for allegedly stealing a backpack and spent two of those years in solitary confinement. Upon release he suffered from mental health issues and ultimately committed suicide.

III. Nicole Goodkind, Top 5 Secrets of the Private Prison Industry, yahoo! Finance, August 6, 2013, https://finance.yahoo.com/blogs/daily-ticker/top-5-secrets-private-prison-industry-163005314.html

a. Classroom discussion includes incentives for healthcare professionals to adhere to bioethics principles, and to examine if there are situations in which scarcity of resources, personal interests, or other professional conflicts would take precedence over such principles. This same tension exists in the criminal justice system. Outsourcing carceral activities to private parties exemplifies this issue.

IV. Andrew Cohen, How Americans Lost the Right to Counsel, 50 Years After ‘Gideon’, The Atlantic, March 13, 2013

a. With respect to the concept of informed consent in bioethics, we discuss how power dynamics and cultural differences between the doctor and the patient. In order to show the prevalence of bioethics principles in other fields, we read about the right to legal counsel, and the power imbalance between lawyers and clients, and also between the prosecution and public defenders.

V. Corinne A. Carey, No Second Chance: People with Criminal Records Denied Access to Public Housing, 36 University of Toledo Law Review 545 (2005).

a. The ramifications of a criminal record extend far beyond the incarcerated period. Similarly, the consequences of patients falling victim to a dearth of bioethics principles extend beyond the healthcare system. Often times, patients who are marginalized or oppressed in other ways are most harmed by a failed healthcare system. We use the example of formerly incarcerated people being among the most at risk for homelessness, yet prohibited from public housing, to draw a parallel to fields of study outside of bioethics.

Week 6: Guest Speaker [(virtual), re COVID]

Goal: To provide an opportunity for students to see how bioethics issues are embedded in the decisions that are being made daily with respect to COVID testing, treatment, and vaccines and, tapping into their own experiences, identify ways to alleviate the stark disparities and structural injustice revealed through the pandemic. 

Read

I. Lindsey R. Baden, Eric J. Rubin et al., We Can Do Better – Improving Outcomes in the Midst of an Emergency, New Engl. J. Med, 377(15): 1482-1485 (2017)

Week 7: Research Ethics

Goal: The Tuskegee Study of STD is the most infamous 20th Century US example of research malfeasance, and its public revelation launched the modern era of government regulation of biomedical research. The goal of this class is to introduce the students to the facts and the consequences of that event, develop an appreciation for the lingering shadow of the study over attitudes concerning research and medical care delivery in minority communities, and highlight ways researchers are working to overcome this history and ensure diverse communities benefit from research.

Read

I. Allan M. Brandt, Racism and research: The case of the Tuskegee Syphilis study,” The Hastings Center Report 8(6): 21-29 (1978).

II. Arthur L. Caplan, When Evil Intrudes, The Hastings Center Report, 22(6): 29-32 (1992).

III. Brynn Holland, The ‘Father of Modern Gynecology’ Performed Shocking Experiments on Slaves, History.com, August 29, 2017 (updated December 4, 2018) https://www.history.com/news/the-father-of-modern-gynecology-performed-shocking-experiments-on-slaves.

IV. Paul Adepoju, Africa’s first biobank start-up receives seed funding, The Lancet, 394: 108 (2019).

V. Wendy Brown White, Asoka Srinivasan et al., Capacity-Building for Career Paths in Public Health and Biomedical Research for Undergraduate Minority Students: A Jackson Heart Study Success Model, Ethnicity & Disease 26(3): 399-406 (2016)

Watch [in class]

Deadly Deception

Week 8: Housing

Goal: The purpose of this class is for students to understand how law, development decisions and policies adversely affect the impoverished population, and to explore the connection (or lack thereof) between the policies that created our current welfare system and the principles of bioethics. The students will also reflect on the prevalence of stigmatization in their own lives and communities, and how this stigma influences the use of bioethics to address involuntary displacement and equitable social service structures.

Read

I. Community Involvement, in Institute of Medicine, Committee on Ethical Issues in Housing-Related Health Hazard Research Involving Children, Youth, and Families, Ethical Considerations for Housing-Related Health Hazards Involving Children, Bernard Lo and Mary Ellen O’Connell, Eds., National Academies Press (2005), pp. 76-98.

a. Connecting the principle of beneficence to the moral obligation that community members have to ensure the safety of families in the neighborhood is a theme that we discuss as we read this article about environmental hazards in housing, and the impact on children.

II. Austin Sarat, “. . . The Law Is All Over”: Power, Resistance and the Legal Consciousness of the Welfare Poor, 2 Yale J.L. & Human. 343 (1990)

a. Marginalized individuals are constrained by legal, social and political systems, and this article shows how laws designed to create opportunities for some result in the oppression of others. We discuss how the application of bioethics principles to the legal system can address this problem.

III. Aid to Families with Dependent Children (AFDC) and Temporary Assistance for Needy Families (TANF), Overview, http://aspe.hhs.gov/hsp/abbrev/afdc-tanf.htm

a. These laws provide cash assistance to qualifying individuals, and we discuss how the eligibility criteria has elements of moral judgments. We discuss if the criteria is “ethical” as defined in bioethics.

IV. Center on Budget and Policy Priorities, TANF Should Reach Many More Families in Georgia, https://www.cbpp.org/sites/default/files/atoms/files/tanf_trends_ga.pdf

a. This report illustrates the decline of TANF’s reach to families who are eligible for and in need of cash assistance. We discuss how declining TANF caseloads are a priority for policymakers, though declining caseloads in times of rising poverty are not critically analyzed. Students view these political decisions through a bioethics lens to understand how people living below the poverty line are affected by this approach.

V. Williams v. Martin, 283 F.Supp.2d 1286 (2003)

a. This case upheld the ability for TANF to cap the amount of children for which a family can receive benefits. We discuss the stereotypes of people who allegedly abuse benefits, such as Medicaid, Medicare and TANF, and how laws and policies taken into potential abuse of these programs compared with programs designed to provide monetary benefits to people with higher incomes.

VI. Ron Haskins, The myth of the disappearing middle class, The Washington Post, March 29, 2012

a. This article is written from a perspective that places the onus of being impoverished on the person living in poverty. We examine the concept of personal autonomy as a justification for laws and policies that prohibit those deemed as undeserving from receiving public benefits.

VII. James Tracy, Hope VI Mixed-Income Housing Projects Displace Poor People, from RP&E Journal 15(1): Who Owns Our Cities https://www.reimaginerpe.org/node/1811#:~:text=In%20reality%2C%20what%20often%20happens,subsidies%E2%80%94to%20lose%20their%20homes.

a. We discuss how and if the principles of bioethics should be applied when making urban planning and development decisions. This article illustrates gentrification and its effects, as well as the effects of replacing public housing with mixed-income housing.

VIII. David K. Shipler, A Poor Cousin of the Middle Class, The New York Times Magazine, January 18, 2004.

a. This article uses storytelling to show how poverty is the result of a number of external factors, and how stigma and shame can perpetuate inhuman treatment. The subject of this story is a woman who has worked minimum wage jobs her whole life, been the victim of domestic violence, suffers from health issues, and who struggles with financial literacy.

b. Students discuss how the concept of non-malfeasance given the prevalence of abject poverty.

Listen to

I. Ira Glass, House Rules, This American Life, November 22, 2013 https://www.thisamericanlife.org/512/house-rules.

a. This podcast gives a historical overview of private and public housing discrimination. We discuss how historical racism can and should be addressed by racial justice laws and policies in present day. Bioethics principles are, in part, a response to historical racism by healthcare providers and the healthcare system. Our goal is for students to understand that the study of bioethics is transferrable to different professions.

Week 9: Peer Evaluation, Writing and Editing

Goal: Student develop skills in giving and receiving feedback through a structure process of peer evaluation.

Week 10: Guest Speaker

Goal: Provide an opportunity to learn from community-engaged researcher and provide positive role model.

Week 11: Confidentiality in Medicine

Goal: The goal of this class is to explore the concept of confidentiality, its role in medicine, and exceptions to it. Case examples will illustrate how facially neutral policies can have disproportionate impact on underrepresented minorities.

Learning objectives:

At the end of this session, students will be able to:

i. Explain why confidentiality is an important norm for medicine
ii. Identify and give the rationale for common confidentiality exceptions
iii. Describe the risks those exceptions can have to underrepresented minorities

Read

I. Mark Siegler, Confidentiality in Medicine – A Decrepit Concept, New Engl. J. Med. 307(24): 1518-1521 (1982).

II. Evan G. DeRenzo, Privacy and Confidentiality, in Fletcher’s Introduction to Clinical Ethics, University Publishing Group, pp. 87-97.

III. Tarasoff v. Regents of the University of California, 17 Cal.3d 425 (1976).

IV. Ferguson v. City of Charleston, 121 S.Ct. 1281 (2001).

V. Jessica Horan-Block, A Child Bumps Her Head. What Happens Next Depends on Race, The New York Times, August 24, 2019.

Week 12: Eugenics

Goal: To provide students with background for understanding the impact of eugenic thinking on governmental reproductive interventions involving minority populations, including the massive sterilization programs among Native Americans, Puerto Ricans and African Americans unearthed as a result of the Relf case and its aftermath.

Read

I. Reif v. Weinberger, 372 F.Supp. 1196 (D.D.C. 1974).

II. John A. Robertson, Norplant and Irresponsible Reproduction, The Hastings Center Report, 25(1): S23-S26 (1995) https://www.jstor.org/stable/3562508.

III. Gregory Michel Door, Protection or Control? Women’s Health, Sterilization Abuse, and Reif v. Weinberger, in A Century of Eugenics in America: From the Indiana Experiment to the Human Genome Era, Paul A. Lombardo, Ed., Bloomington & Indianapolis: Indiana University Press (2011), pp. 161-190.

Week 13: Access to Family Planning

Goal: To expose students to the controversies and dilemmas that are embedded in contemporary debates over access to reproductive health interventions, including birth control and abortion.

Read

I. Judith Jarvis Thomson, A Defense of Abortion, Philosophy & Public Affairs, 1(1): 47-66 (1971).

II. Harry J. Gensler, A Kantian Argument Against Abortion, Philosophical Studies, 48: 57-72 1985).

III. Michael J. Sandel, Embryo Ethics – The Moral Logic of Stem-Cell Research, New Engl. J. Med. 351(3): 207-209 (2004) and Paul R. McHugh, Zygote and “Clonote” – The Ethical Use of Embryonic Stem Cells, New Engl. J. Med. 351(3): 209-211 (2004).

IV. William Neaves, The status of the human embryo in various religions, Development, 144: 2541-2543 (2017).

Week 14: Advance Care Planning

Goal: The purpose of this class is to explore how inequities in the healthcare system may impact willingness to engage in advance care planning and to highlight the work of diverse scholars to affect change.

Read

I. Katharine Q. Seelye and Jess Bidgood, Guilty Verdict for Young Woman Who Urged Friend to Kill Himself, The New York Times, June 16, 2017.

a. We return to the concept of autonomy with discussion of a current story that requires students to examine mental health, and power dynamics in the context of consent.

II. Kimberly S. Johnson, Maragatha Kuchibhatla, and James Tulsky, Racial Differences in Self-Reported Exposure to Information about Hospice Care, Journal of Palliative Medicine, 12(10): 921-927 (2009).

III. Julia Craven, How Racial Health Disparities Will Play Out in the Pandemic, Slate, March 30, 2020 https://slate.com/news-and-politics/2020/03/how-racial-health-disparities-will-play-out-in-the-coronavirus-pandemic.html

a. This article provided background for our classroom discussion on how to decide which people should receive the vaccine first, and how to appropriately address the adverse impacts of the pandemic that were exacerbated in communities of color due to systemic issues.

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Appendix 2: Additional Resources

We used multiple resources to identify materials for use in our course, and there are many more high-quality articles, videos, and other resources than we could include. Other teachers may focus on different topics. Recognizing that any list will invariably leave off excellent options, and that more resources become available each day, we want to highlight some resources that we found helpful.

Websites

A particularly helpful resource for identifying diverse scholars on particular topics, whether for course materials or speakers, is diversebioethics.org, maintained by Holly Fernandez Lynch from the University of Pennsylvania. The purpose of the list is “to amplify the voices of diverse, underrepresented scholars at all stages of their careers doing work related to bioethics and to increase awareness of their expertise.” It can be used “as a starting point for: faculty recruiting, identifying project/grant collaborators, identifying working group/committee members, inviting lecturers/panelists, identifying media sources, diversifying course syllabi.” The website acknowledges that most LatinX entries were initially created by https://latinxbioethics.com. It also acknowledges the List of Bioethicists of Color available at https://drive.google.com/file/d/1nhi3U6ARfEahmBjqza9NX6T4Kzt0vaPT/view.

Videos

The internet is a tremendous resource for videos that can be used to introduce concepts and stimulate conversation. As remote conferences and talks become the norm during the COVID-19 pandemic, the number of videos available for use in teaching has expanded. However, many of these are longer than ideal for use in the classroom. We have developed a collection of short videos that highlight the work and careers of diverse scholars that we are available on the Georgia State University College of Law website (https://readingroom.law.gsu.edu/bioethics/) for use in teaching. We also highly recommend Monica Peek’s video “Segregation is Bad for Your Health” (youtube.com/watch?v=hkHXOYMa4ck).

Ted Talks and their progeny (e.g., TedMed, Ted[Institution]) are a potentially rich source of material, as they are designed to be short, engaging, and informative. Some examples we considered include:

- Camara Jones, M.D., M.P.H., Ph.D., Morehouse College of Medicine, "Allegories on race and racism"  TedxEmory, available at https://www.youtube.com/watch?v=GNhcY6fTyBM  (approximately 20 minutes). (Dr. Jones’s storytelling approach illuminates different ways to approach race and racism and inspires action to improve health equity.)

- Denisse Rojas Marquez, M.D., “No longer afraid: an undocumented immigrant's experience in American health care,” https://www.youtube.com/watch?v=X7m3FUSeXCE (approximately 12.5 minutes)(Dr. Marquez describes her mother’s experience in the US health care system and how it inspired her to pursue her medical degree.)

Useful videos may surface in other ways. Our searches uncovered the work of Malone Mukwende, a medical student in the United Kingdom, who was disturbed by the failure of his medical textbooks to talk about how some conditions may present differently in brown or black skin. His conversations with his teachers led to a collaboration that resulted in a book, “Mind the Gap,” to remedy this omission. (see https://www.blackandbrownskin.co.uk/) The video (https://youtu.be/4L7HgDZFXJs) describing the book and the motivation for it is short and provides some background that can effectively introduce the topic of bias in medicine, as well as provide inspiration to students about how they can make a difference.