February 2024

First-Person Bioethics | Reflections of and on Personal Experience

Whether in law, health care, policy, research, or elsewhere, bioethics discourse is enriched when it is informed by and responds to first-person perspectives on the challenges with which the field engages. Though precisely how and to what extent to bring personal experience to bear on such inquiry is a matter of debate, as we will see below, it unquestionably informs how we think about the hard problems of bioethics. 

Greenwall Building Bioethics Research & Policymaking grantee Nancy Berlinger, PhD, described in a recent blog post that “[work] and life overlapped significantly for [her]” when her housing and aging-related project “coincided with changes in [her] 89-year-old mother’s health that…resulted in a change in her housing.” It was not the first time that a member of the Greenwall community has grappled personally with issues that they’ve considered professionally: read on for more exploration of the ways in which personal experience informs our community’s thinking on bioethics issues.

Mara Buchbinder, PhD | Faculty Scholar Alum
This Fall, Prof. Buchbinder authored an op-ed in STAT about the experience of her husband becoming a “patient-in-waiting”—a concept she and colleague Stefan Timmermans, PhD, first laid out in a 2010 journal article. Prof. Buchbinder’s husband, Jesse Summers, received a positive result on a predictive screen for metastatic colon cancer after previous tests revealed no evidence of disease, narrowing treatment options until the disease showed up on more traditional scans. After publishing the perspective piece, Prof. Buchbinder and Prof. Summers went on the STAT First Opinion podcast to discuss how new knowledge about the disease—particularly in the absence of a standard of care—did not alleviate worry; indeed, Prof. Buchbinder said of the experience with her husband that “the worry, fear, and uncertainty” brought on by the positive predictive test “were not that much different than they were with actual disease.”

Emily A. Largent, JD, PhD, RN | Faculty Scholar Alum
In The Philadelphia Inquirer, Prof. Largent wrote a piece with her brother about a car accident he was involved in. Prof. Largent’s takeaways from the experience, which she framed as advice for people in their communication with doctors, included an emphasis on asking for “the headline,” striving for understanding of the condition, and forthrightness about patient needs and expectations. “The aftermath of Elliott’s accident,” Prof. Largent wrote, “underscored in personal ways what I know professionally” from studying doctor-patient communication.

Joel Michael Reynolds, PhD | Faculty Scholar
Prof. Reynold’s scholarship focuses extensively on disability, and the ethical questions that arise from its consideration. In 2022, Prof. Reynolds published The Life Worth Living: Disability, Pain, and Morality, a book that explores “how longstanding views of disability are misguided and unjust,” weaving together philosophical and historical arguments with Prof. Reynolds’s own personal and familial experiences with disability. 

Michelle M. Mello, JD, PhD | Faculty Scholar Alum
In July of 2021—when COVID-19 vaccines were just a few months old and worries about side effects raged amid a muddled information environment—Prof. Mello’s husband suffered a stroke mere days after receiving his shot. “I worship in the church of data,” Prof. Mello wrote in an opinion piece in the San Francisco Chronicle, and she knew that the vaccine wasn’t associated with a risk of stroke. Despite her trust in the vaccines, though, she admitted to trepidation about allowing her son to receive the shot. Ultimately, Prof. Mello didn’t “surrender to [her] hesitancy,” and proceeded to have her son vaccinated—while the experience of her husband’s stroke was challenging, she emphasized the importance of “[making] the best decisions we can with the information we have.”

In 2023, Prof. Mello wrote a follow-up piece after her husband was diagnosed with an auto-immune disease. The journey to this diagnostic knowledge, she wrote, was challenging in part because of the biases that people bring to evaluating information about our own health, where “we need uncertainty resolved. But how we go about doing that can be deeply problematic.”

Each of these pieces reflect ways in which personal experience can inform beliefs, scholarship, and actions on bioethics issues. But what is the best way to do that? How can bioethics scholars balance “insight that is difficult to garner through observation or testimony” with “the potential to generate conflicts of interest and unrepresentative perspectives”? So asked Faculty Scholar Alums Holly Fernandez Lynch, JD, Miranda R. Waggoner, PhD, and Jennifer Blumenthal-Barby, PhD, alongside colleagues in a target article in The American Journal of Bioethics titled Bioethics and the Moral Authority of Experience. They offer a set of questions to be asked about what role experience is playing in any given ethical analysis in an effort to “identify a middle path between the fiction of disinterested analysis and the facts of conflicts of interest and partial representation.” 

The piece inspired considerable scholarly engagement, including from Faculty Scholar Craig Konnoth, JD, who worked to “complicate and clarify” its arguments in writing on The Problem of “Relevant Experience.” Faculty Scholar Faith Fletcher, PhD, also responded, writing alongside colleagues Rethinking the Moral Authority of Experience: Critical Insights and Reflections from Black Women Scholars.

As the field continues to grapple with how best to make sense of personal experiences as they relate to the challenging questions in bioethics, the Greenwall community is sure to remain engaged in this work. To keep up with the latest activity, subscribe to our monthly newsletter and follow us on social media.