Introduction

In the last two decades there has been an increased push to involve stakeholders (such as patients) more directly in bioethics and policy research and decision making. This can be seen, for example, in the development of the Patient Centered Outcomes Research Institute (PCORI) and the methodology of Community Based Participatory Research (CBPR). Before this, it was not uncommon to conceive of this research as being performed on these stakeholders as opposed to alongside them, with their input, etc. This signals a shift in who we consider authorities and where we consider knowledge, including moral knowledge, as coming from. Where before the researcher or scholar was the “expert” and the patient or stakeholder was the subject, stakeholders are now recognized as having expertise grounded in their relevant lived experience.

This shift raises new ethical questions and dynamics in the context of philosophy, bioethics, and policy. What contributes to the expertise of personal experience as opposed to that which comes from training? What is the most ethically justified approach for incorporating stakeholders into the policy and decision making process? How do we handle disagreements among those with lived experience, or between bioethicists and those with lived experience? Should bioethicists with lived experience use this expertise in their own research? If so, is the involvement of one’s own personal experience in research without ethical risk? As community involvement in bioethics increases in a variety of contexts, these and other questions will only become more pronounced and pressing.

Assigned Readings

Ryan H. Nelson, Bryanna Moore, Holly Fernandez Lynch ,Miranda R. Waggoner & Jennifer Blumenthal-Barby (2022): Bioethics and the Moral Authority of Experience, The American Journal of Bioethics, DOI: 10.1080/15265161.2022.2127968

Thesis: The authors argue that“appeals to experience in bioethics should not be considered either disqualifying or authoritative without further considering the stakeholder’s standing as both a knower and an interested party,” (13). They do so by presenting the way this question of the role of personal experience manifests in several contexts within bioethics (e.g., disability, FDA approval and expanded access). The authors suggest that incorporating lived experience is a balancing act, where we must account for both the assets of this expertise as well as any liabilities that may come with it. In particular, they offer a taxonomy of appeals to experience which distinguished between appeals that are epistemically motivated versus those that are justice-based.  The article draws on recent philosophical work in moral epistemology including feminist epistemology.

Discussion Questions

  1. What is the ‘paradox of experience’? In what ways is experience a liability, and in what ways is it an asset?
  2. What counts as personal/lived experience? In the domain of bioethics, are there certain types of experience that matter more or less than others?
  3. What is the goal of including different stakeholder voices in bioethics and policy research? What is the ethical impact of this inclusion?
  4. Given that patients (and stakeholders groups more generally) are not monolithic (14), how should bioethicists handle disagreement among those with lived experience?
  5. What are justice-based justifications for including or privileging the voices of stakeholders with personal experience (19)? What about epistemic advantage-based justifications?

Additional Readings

Adler, Rachel R., Randi N. Smith, Kevin J. Fowler, Jeffery Gates, Nichole M. Jefferson, Joel T. Adler, and Rachel E. Patzer. 2022. “Community Based Participatory Research (CBPR): An Underutilized Approach to Address Surgical Disparities.” Annals of Surgery 275 (3): 496–99. https://doi.org/10.1097/SLA.0000000000005329.

Fletcher, Faith E., Folasade C. Lapite, and Alicia Best. 2023. “Rethinking the Moral Authority of Experience: Critical Insights and Reflections from Black Women Scholars.” The American Journal of Bioethics 23 (1): 27–30. https://doi.org/10.1080/15265161.2022.2146807.

Jones, Nev, Kendall Atterbury, Louise Byrne, Michelle Carras, Marie Brown, and Peter Phalen. 2021. “Lived Experience, Research Leadership, and the Transformation of Mental Health Services: Building a Researcher Pipeline.” Psychiatric Services 72 (5): 591–93. https://doi.org/10.1176/appi.ps.202000468.

Kimhy, David, Nev Jones, and Lisa Dixon. 2022. “Investing in a Research Workforce With Personal Experience of Serious Mental Illness.” JAMA Psychiatry, August. https://doi.org/10.1001/jamapsychiatry.2022.2026.

Nelson, Ryan H., Bryanna Moore, Holly Fernandez Lynch, Miranda R. Waggoner, and Jennifer Blumenthal-Barby. 2023. “Bioethics and the Moral Authority of Experience.” The American Journal of Bioethics 23 (1): 12–24. https://doi.org/10.1080/15265161.2022.2127968.

Pearlman, Savannah, and Elizabeth Williams. 2022. “Why You Ought to Defer: : Moral Deference and Marginalized Experience.” Feminist Philosophy Quarterly 8 (2). https://ojs.lib.uwo.ca/index.php/fpq/article/view/14386.

Pratt, Bridget. 2021. “Achieving Inclusive Research Priority-Setting: What Do People with Lived Experience and the Public Think Is Essential?” BMC Medical Ethics 22 (1): 117. https://doi.org/10.1186/s12910-021-00685-5.

Ray, Keisha Shantel. 2021. “It’s Time for a Black Bioethics.” The American Journal of Bioethics 21 (2): 38–40. https://doi.org/10.1080/15265161.2020.1861381.

Stramondo, Joseph A. 2016. “Why Bioethics Needs a Disability Moral Psychology.” Hastings Center Report 46 (3): 22–30. https://doi.org/10.1002/hast.585.

Sweeney, Angela, and Peter Beresford. 2020. “Who Gets to Study Whom: Survivor Research and Peer Review Processes.” Disability & Society 35 (7): 1189–94. https://doi.org/10.1080/09687599.2019.1664062.