0.2.2: Ethical Methods

I began this project by developing the tuberculosis corpus and image dataset (0.2.1; X.1.1; X.1.3), but the process of working with, writing with, and thinking with these materials made the initial project ethically untenable. In this dissertation I argue about the ways medical scientists turned their patients into research objects. As I was working early-on in the project, I found myself turning these people into my own research objects, so as to use them as specimens—ones who can be used to make my scholarly claims. I found myself following a similar epistemic framework of the scientists I critique.

Jessica Marie Johnson writes about the problems of doing digital work with data created through histories of violence. In her essay on cliometric analyses of the transatlantic slave trade she writes,

From blogs and journals built on fourth-generation hypertext markup language (HTML) guided by cascading style sheets (CSS) to databases using extensible markup language (XML) and standard query language (SQL), scholars using tools mark up the bodies and requantify the lives of people of African descent. These pursuits have not and do not exist in isolation from tensions inherent to constructing histories of bondage. Databases, for example, reinscribe enslaved African’s biometrics as users transfer the racial nomenclature of the time period (négre, moreno, quadroon) into the present and encode skin color, hair texture, height, weight, age, and gender in new digital forms, replicating the surveilling actions of slave owners and slave traders. There is nothing neutral, even in a digital environment, about doing histories of slavery, and technology has not made the realities of bondage any more palatable or easier to discuss across audiences or platforms.¹

The problem for scholars is that we cannot just do critical research on the past, but also consider the ways our research dehumanizes our research interlocutors with the same violent frameworks that enabled the harm in the first place. Johnson writes later in the article,

The slave trade, in its drive for profit, dismantled black humanity. It is this twinned reality, the entanglement of profit with dismembered black limbs, the immense data generated by death for capital, that digital humanistic study must contend with and slavery studies cannot hope to hide from. There is no bloodless data in slavery’s archive. Data is the evidence of terror, and the idea of data as a fundamental and objective information. . . obscures rather than reveals the scene of the crime.²

For the history of medicine, the problem is not just the researchers or their methods, but the parallel practices which are implicitly leveraged in biomedical practice. These practices, too, share a meta-epistemic assumption which sees the patient, as specimen and research object, as fair game for knowledge production. All of us—medical scientists, health humanists, historians of medicine, medical media scholars—are vultures picking at the bodies of the people we proclaim to support.³

This dissertation addresses this massive, frankly impossible, problem through an ethics articulated by postcolonial and anticolonial scholars hailing from Indigenous communities in North America as well as Afro-Caribbean philosophers. I use the term ‘ethics’ to speak to a heuristic approach to problems in research, but have chosen to avoid the largely Western canon of ethical philosophy, due to my scholarly interlocutor’s obvious indifference to these thinkers.⁴

The born digital dissertation emerged in concert with the ethical problems I addressed above: I could not engage with this dissertation’s ethical crisis in only a written form. A written dissertation would be incapable of showing how the removal of materials could itself be an argumentative method (4.2.3; 4.2.4; 4.3.5). Kalani Craig and I developed the Opaque Online Publishing Platform (OOPP) to make evident the necessary exploitation that was required for doing critical work in the history of medicine and the health humanities (4.1.1; 4.1.2; 4.2.1). We wanted to show how digital research can forward critical, postcolonial, and antiracist approaches to knowledge work.⁵

I will go into more detail about this ethical work in the fourth chapter (4.1.1), but for the sake of this introduction I will demarcate how my ethical interventions alter my argument. As you may have encountered in the “How to Use this Site” page, this dissertation has been built to afford multiple experiences of its primary and argumentative materials. The main feature is an Opacity Filter which toggles images and text visible to the reader, based on how these materials use the bodies and lives of patients (4.2.4; 4.3.1; 4.3.3). The hierarchy works as follows:

• Transparent: There is no alteration to the image or text.
• Partially Opaque: The images and text have been altered to respect the anonymity of the research subject imaged, with the explicit goal to maintain the potential knowledge that might be gleaned from the original material.
• Opaque: Research subjects who could not consent or research objects taken from the body of a patient where the record of consent would be impossible to locate, have been removed from the images and text.

This framework was constructed around the assumption that most of the primary materials in the tuberculosis corpus and dataset were made without the informed consent of the patients involved. Informed consent, an ethical framework which was developed following the revelations of abuse perpetrated by Nazi scientists during the second world war, refers to a patient being first informed of all of the potential effects of a research practice done to them, and, second, that patients are able to give positive agreement to participate in the research program as it occurs.⁶ Consent is affirmative, ongoing, and can be relinquished, meaning that patients within a study have the ability to back out of it at any point for any reason.⁷

Consent as an ethical standard is imperfect. As Audra Simpson has argued, outside the context of medical research, consent has been given through coercive and punitive force.⁸ In medical contexts, it is difficult to square the promise of medical research into a terminal or chronic disease and a treatment program’s potential side effects. For this study, even if the patient did consent to autopsy, even if they did consent to a doctor photographing their body, even if they consented to their life and biometrics to be reproduced on text, the patient probably would not be able to fathom why their body, their life, their organs might be framed in an online publication by a media scholar.

This project’s ethical center is found in the conscious erasure of stolen materials—materials taken under the assumption that these research objects might prove valuable for future researchers. It thinks about how so much of the written, illustrated, photographed, and biometric material in medicine’s primary sources was probably stolen, not just the objects found in pathological museums (0.1.1; 2.2.0), because so much of medicine’s epistemic tradition is built upon the bodies of its patients. As Megan Rosenbloom has written, “if books have to be removed from a medical library because the bodies depicted in them were obtained through unethical and nonconsensual means, there might not be an anatomical text left on the shelf.”⁹ The whole program is a charnel house, and its epistemic premises need to be examined in detail, include representative objects—like books and journal articles and pamphlets—that appear clean. Kimberly Chirsten, who developed the open archival platform Mukurtu, describes this problem, broadly:

What is not generally discussed is the vast store of materials in Western museums, archives, libraries, and personal collections that were not voluntarily given, and would not generally meet the standards of prior informed consent. The colonial collecting history of Western nations is comfortably forgotten in the celebration of freedom and openness that would give ‘us’ a storehouse for the common good.¹⁰

The ethical intervention employed by this project is one which imagines a history of medicine that does not depend on stolen materials, and which examines instead the practices that made that theft so important for epistemic claims and professional, disciplinary, and institutional value (0.1.4).