Prisoners as Living Organ Donors

This chapter considers the special case in which a prisoner seeks to serve as a living donor and what lessons can be learned from human subjects protections for research participants given that both activities are done with the primary goal to benefit third parties. In the federal regulations that codify human subjects protections in the US (45 CFR 46), there are additional protections enumerated for research on prisoners. Current Department of Justice Federal Bureau of Prisons policy allows prisoners to serve as living donors but only for first-degree relatives. This chapter describes what special considerations should be assessed for prisoners to ethically serve as potential living donors using a vulnerabilities approach adapted from the human research subjects protection literature. The donor transplant team (living donor advocacy team) needs both a living donor advocate and a prisoner liaison to ensure that the potential prisoner-donor satisfactorily addresses the vulnerabilities faced by prisoners.

Teaching About Systemic Ethical Misconduct Increases Awareness of Ethical Principles: A Replication and Extension of Grose-Fifer’s (2017) Tuskegee Role-Play Activity

Background: Introductory Psychology students rarely learn about unethical biomedical research outside the Tuskegee syphilis study, but these practices were widespread in U.S. public health research (e.g., at the Willowbrook State School researchers infected children with disabilities with hepatitis). Objectives: Replicate and extend Grose-Fifer’s research ethics activity by evaluating if an online homework and in-class role-play increased awareness of unethical research and abuses at Tuskegee (replication) and Willowbrook (extension) and subsequent changes in human subjects protections. Method: As homework, students read about the studies and wrote statements from perspectives of individuals involved. In class, students read their statements and discussed how outrage led to research conduct regulations. Online pre/posttests asked students why it was important to learn about both studies. Results: At posttest, students were more aware of unethical research at Willowbrook and that Tuskegee led to changes in human subjects protections. Students who completed the role-play activity were less likely to mention abuses for Tuskegee than students who did not participate. Conclusion: We were partially successful in replicating and extending Grose-Fifer. Teaching Implications: Research ethics instruction should draw attention to historical precedents and how public outrage and social activism led to increased protections for research participants.

“Normally I Try and Capture a Moment, and With This I Had to Create a Moment”: Implications of Anonymous Photography Protocols in Photovoice Research with People Who Inject Drugs

Photovoice collaborations are designed to promote critical consciousness and advocate for change. People who inject drugs (PWID) are systematically silenced from advocacy for fear of being “outed.” Photovoice protocols that prohibit identifying photography provide a safer alternative; however, it is not known how these protections affect participant experience. This study examined how human subjects’ protections affect PWID experience in a Photovoice research project. A purposeful sample of PWID ( N = 25) was recruited from a Photovoice study and engaged in semi-structured interviews. Interview transcripts were coded and analyzed for key themes. The majority of participants understood the protections while also explaining the difficulty in achieving their vision. Creativity played a significant role in overcoming the restrictions. A vocal minority voiced strong objections to the restrictive protocol. Allowing only anonymous photography posed certain challenges, but PWID valued the inherent privacy. Creative approaches may aid in overcoming restraints and achieving a balance.