Preface

The academic research environment in the United States changed quite drastically in the time between when I submitted this dissertation to my committee on January 3rd, 2025, when I successfully defended it on February 24th, 2025, and when I published it on May 9th, 2025. The second Trump administration’s attacks on research institutions like the National Institutes of Health (NIH), National Library of Medicine (NLM), Institute of Library and Museum Sciences (IMLS), and the National Endowment for the Humanities (NEH) have harmed the potential for new research across every academic discipline in the United States.

These attacks on the sciences and humanities have given me pause. Regarding some of the claims in this dissertation, I feel a need to contextualize and historicize my arguments. It was much easier to critique the capitalist knowledge infrastructure in the United States, when institutions could reliably depend on federal funding to pursue research interests, and when that funding was taken for granted by researchers and administrators alike. In this context, I feel like I am punching down, and that my ideas may be inadvertently giving fodder the technofascists who seek to dismantle American research funding. If I am honest, I am still trying to get a handle on these changes, and I am not sure what American research—scientific and humanistic—will look like in a year, let alone a decade.

I have decided to keep this dissertation in the form I submitted to the committee in January 2025, and which was passed by the committee that February. I have also decided it is best to keep this dissertation in an open, web-based form.

My reasons are relatively simple. First, I want to be open and honest about my thinking. There is value in being able to trace a line of thought through time. I disagree with many of the decisions I made in my previous academic and artistic work (3.2.1; 3.2.4; 3.3.1), and I find value in being transparent my assumptions and faults (3.1.2). This dissertation, in all of its care for its research interlocutors, is quite hostile to the biomedical practices and professionals it examines. I suspect my next step, now that the dissertation is complete, is to consider academic systems as being multi-tiered, and that the top-down administrative systems are always at odd with the bottom-up engagements by scholars trying to change their disciplines, their institutions, their nations.

Second I like to think my arguments are much more about the overarching systems of academic research, and not necessarily the results of that research. Where many of the historical issues come from a presumed ownership of human tissues and health data, most of the solutions I propose require heavy investment: spending time to build connections with communities (and ideally pay them for their work), hiring professionals to comb through primary sources and apply new and different ethical frameworks to those materials (including but not limited to the divestment, destruction, or removal of those materials from archives and libraries), and developing tenure guidelines that see less return on investment. My hope is not to destroy our knowledge systems; instead, I hope to provide frameworks for thinking through how they can be more equitable, especially in regards to open historical wounds.

It is, perhaps, a bit disingenuous to pen a document as long as a dissertation, and then open it by immediately back-peddling. My hope, however, is to take a position of academic vulnerability and honesty. We are all trying to make arguments in our research, and we all find flaws and limits in our scholarship. Doing research is much more about process than it is about final results, and every step of that process, even those that appear as capstones, is just another stepping stone in the development of our understanding.

I do hope you take time to read this project, and I hope it is helpful for your own work and understanding.

Thanks so much,

Sean Purcell

April 23, 2025