FIELDWORK: An Oral History of Hand Transplantation from the Patients’ Perspective
ABSTRACT: In the late 1990’s, the first successful human hand transplants marked a major development in the medical fields of transplantation and reconstructive surgery, simultaneously vexing ethicists over their potential to complicate patient health and delighting journalists with a new source of grist for macabre and miraculous storytelling. Today, the vast majority of published literature and information on human hand transplantation has been written by those doctors or researchers performing and studying hand transplants (in the form of academic papers and textbooks), coded in the language of medical/scientific evaluations and recommendations.
This project—an oral history of hand transplantation from patients’ perspectives—complements the current literature on these surgeries with a person-focused, thus narrative and emotional, bottom-up view of what hand transplants mean to the people they affect most. By focusing on the memories of patients, not doctors, and by doing this work outside the context of participating institutions, I through my narrators will respond to and in some cases interrupt the one-sided history being written by biomedical professionals. Some themes arising for discussion include the care patients receive (or don’t receive) in experimental settings; the challenging rhetoric of concepts like “good patient” and “good doctor” for high risk, novel interventions; the essential-ness of communication to the healing process; and the perennial question of what it means to be human in an age of ever-shifting borders between “self” and “other."
FIELDWORK: A Survey of Local Attitudes from Key Cities in the History of Hand Transplants
Depending on whom you ask, the world’s first successful hand transplant took place in Lyon, France, the fall of 1998 or in Louisville, Kentucky, the winter of 1999. The French transplant was carried out in secrecy and ultimately failed two years later when the patient requested remputation. By contrast, the Louisville team sought support from the medical community and public before attempting the operation; their patient ultimately enjoyed technical success and a high level of satisfaction—even after reporters discovered the donor hand came from a convicted murderer.
Hand transplants remain controversial because of their high price tag and health risks. Many doctors and would-be donors consider the operations at best unwarranted and at worst a drain on dwindlng health care resources. Because of its reliance on donations from willing citizens (and/or laws and policies that enhance organ availability), transplantation is arguably the field of medicine most reliant on public support and approval. Having researched hand transplantation extensively for my master’s thesis at MIT and as a long-time resident of Louisville, KY, I have been consistently surprised by the level of pride, enthusiasm, and positivity Louisvillians express for hand transplantation as a medical achievement—even if they, personally, do not approve of the procedures. Is this because, as one Louisville doctor once exclaimed, “getting public and professional feedback before doing the procedure—[may be] as important as the transplant”?
How does communication and transparency between medical researchers and the public affect memory and attitudes about experimental research? Which matters most in securing community support—institutional rhetoric, media exposure, or the level of success achieved with the intervention? How does the tone of news reporting influence memories of historic medical achievements both during key turning points and after the fact?
This project involves conducting online and in-person surveys with local citizens of Louisville and Lyon to assess and compare current attitudes about and lasting memories of the first hand transplantations. It will offer an as-yet-unrecorded look at the social legacy of these high profile cases as well as an opportunity to examine what shapes public memory of groundbreaking science and medicine.
PAPER: I Want to Be Where the Data Are—the linked problems of knowledge and argumentation in the GMO controversy
In the growing public conflict over GMOs, information is everywhere. Labs, advocacy groups, individuals, corporations, and government organizations frequently publish content about the proven benefits or harms of GMOs. However, non-expert consumers wanting to learn the truth about GMO safety must navigate swells of accusatory rhetoric and heated debate from advocacy groups, where formerly trustworthy researchers’ credentials are questioned and affiliations attacked, making reliable data a seemingly elusive quarry. In looking in on the GMO controversy, one easily feels flooded by facts and statistics leveraged in support of this or that ideological agenda. It’s hard to know how to get to higher ground, or indeed whether higher ground exists. This project explores the problem of fact-finding in the GMO controversy by critiquing the rhetorical efforts of two active and highly visible nonprofits, the Genetic Literacy Project (GLP), and Natural News (NN), exploring how these rival groups peddle their educational efforts as fully informed and fully objective—in technology theorist Donna Haraway’s words, the “god trick of seeing everything from nowhere.” I will filter the rhetoric of NN and the GLP through the sieve of modern argumentation theory, specifically antilogic and feminist approaches to argumentation, to see if such tools can help proponents and opponents of GMOs relate better to each other, the public, and their own understanding of the social and scientific truth about GMOs (if there is any).
PAPER: The Rhetoric of "Success" in Experimental Medicine: Insights from the growing field of reconstructive transplantion
the humanities the expression “publish or perish” can be daunting and even
unwelcome advice for scholars pressured to distribute what they inwardly feel
are unripe ideas or research in the process of qualifying for tenure or securing
financial support for projects. In science and medicine, this same adage can
take an even more menacing tone when the needs of medical researchers to
compete professionally with colleagues and the sometimes desperate hopes of
patients overlap in the hospital setting or operating theatre. The perennial
conflicts of interest over ends and means in experimental medicine reach their
apex in debates about when new surgical techniques or pharmaceuticals are ready
for use in human beings, and whether, once implemented, the novel interventions
can be called successful.
paper examines how doctors, administrators, and patients in the experimental
field of hand transplantation have disparately characterized “success” with
these treatments almost 20 years from the first attempts—and why it matters for
prospective patients and donors now, after transplantation of hands has opened
the door to transplantation of the face, leg, penis, womb, and possibly soon,
head/body. From subtle linguistic redefinitions of basic medical terminology to
the ethics of equipoise in risk/benefit analyses, I will trace the rhetorical exchanges
made by professionals and compare these to the frank, emotional, and honest
reflections of patients interviewed for a recent oral history project.