The Ethics of Using Human Remains in Medical Exhibitions: A Case Study of the Cushing Center

Abstract

This paper presents an ethical framework for the creation and consideration of medical exhibits displaying human remains. Using the Cushing Center at the Yale School of Medicine as a case study, the aim is to delineate the rights that donors of human tissue maintain post mortem. Moreover, this article focuses a critical lens to the doctor-patient relationship, whether it should extend post mortem, and the implication of this for viewers. Ultimately, this account emphasizes the complex ethical factors that should be considered when assessing the function of a medical exhibition.

Introduction

The Cushing Center is a suite within the Harvey Cushing/John Hay Whitney Medical Library of the Yale School of Medicine (YSM) whose walls are lined with dozens of human brains displayed in jars. These are anatomic specimens left by famed neurosurgeon Dr. Harvey Cushing (1869-1939). Beneath and interspersed between the jars of brains are framed photographs of some of Dr. Cushing’s patients, many of whom appear naked so their pathology can be obviously seen. The connection between the brains and the images within the exhibit is unclear, as the exhibit lacks didactic panels to guide viewers (Figure 1).

Figure 1.

The Cushing Center at a Glance. (a) This image is of the entrance of the Cushing Center, and highlights the number of brains lining the walls of the exhibition with framed photographs propped beneath them. (b) This image highlights the photographs taken by Dr. Cushing to highlight the external pathology of his patients. Of note, there are no didactic panels describing the images or their relation to the brains above them.

Outside the exhibit, posters hung around YSM advertise the Cushing Center as a must see attraction, and online descriptions emphasize the novelty of the exhibit to capture the attention of possible attendees. In effect, it is easy to forget that the brains on display once held the thoughts and feelings of actual people who were more than bodies that housed illness. And yet, while looking at the jars of preserved brains of Dr. Cushing’s former patients, one is given a poignant reminder of their owners’ humanity: their names printed on the labels of each jar.

Historical Context of the Cushing Center

Dr. Cushing first began his tumor registry in 1902, began to photograph his patients in 1903, and continued to collect specimens for his collection until 1930 [1]. The manner in which Cushing acquired his brains is contested within the literature. For the most part, it is accepted that Cushing acquired his specimens from his former patients, although one anecdote outlined in his biography describes how he convinced the curator of an exhibition to remove the brain from the body of a man suffering from gigantism that was on display [2]. Another anecdote describes how Cushing bribed an undertaker to conduct an autopsy from a separate man who suffered from gigantism during his funeral service so as to avoid his family, who had declined Dr. Cushing’s request for an autopsy [3]. And finally, a third anecdote, told by a former resident of Dr. Cushing, describes a time where Dr. Cushing sent an employee of his to acquire the brain of a deceased patient whose family declined Dr. Cushing’s request for the patient’s brain post mortem [4]. It is unclear the extent to which Dr. Cushing engaged in such illicit practices in his quest to acquire more specimens for study. However, Dr. Cushing’s house staff member, Dr. Samuel Crowe, told Cushing’s biographer that “[Dr. Cushing] would stop at nothing to gain his ends. He was so eager for accurate knowledge that he was entirely ruthless as to how he got them [5].”

Ultimately, Dr. Cushing bequeathed his massive collection of brains to Yale in 1935. While he had arranged for the brains to be stored in a tumor registry on campus, it is unclear whether or not he had ever anticipated public display of his specimens. There is only evidence of intent to curate his collection to aid in the education of aspiring physicians in neurosurgery and neuropathology. Dr. Louise Eisenhardt, one of Dr. Cushing’s protégés, took up the charge of curating his collection in the basement of a building on Yale’s campus for the use of young neurosurgeons and neuropathologists from 1939-1967. After 1967, Dr. Cushing’s brains remained largely untouched by the Yale community. It was not until 1996 that the Cushing Center was conceived of by a medical student, Christopher Wahl, Yale neurosurgeon Dr. Dennis Spencer, and curator Terry Dagradi. The purpose of the Cushing Center was to both pay homage to a trail blazing surgeon, and to preserve his one of a kind collection of medical specimens [1].

Ultimately, the history of the Cushing Center raises many questions surrounding the ethical permissibility of exhibiting human remains to the public. These include: 1) What constitutes an ethical display of human remains? 2) Is consent required for the display of human remains? And 3) Should the manner in which human remains were acquired play a role in deciding whether or not they should be displayed?

Medical Exhibitions: Defining an Ethical Framework

To answer these questions, it is important to first understand why medical exhibitions require an ethical framework to guide their curation. In general, exhibits present pathology in a different manner than how it is presented clinically. In the clinical realm, presentations of patients are motivated by furthering medical education and the creation of treatment plans. Thus, patients are presented to care teams as individuals who have other medical, social, and family histories to consider in addition to the pathology they require treatment for. Medical exhibitions, on the other hand, can be motivated by novelty and intrigue, and use a curatorial process to highlight a single aspect of an individual’s pathology. This process includes specifically altering the exhibition’s space, lighting, atmosphere, and ambience to guide the viewers’ understanding and interpretation of the exhibit [6]. Consequently, medical exhibitions allow viewers to create perceptions of certain pathology, or of an individual’s experience of that pathology, that might be inaccurate or unintended by curators. This effectively reduces the legacy of those individuals portrayed in a given medical exhibition to a “hyperbolic display of what is taken to be extraordinary,” [7] and opens up them up to breaches of respect and privacy.

Consequently, it is important to define an ethical framework by which to consider medical exhibitions. According to the International Council of Museums’ (ICOM) code of ethics, human remains must “be displayed in a manner consistent with professional standards and … must be presented with great tact” [8]. The Department for Digital, Culture, Media and Sport (DCMS), a UK based organization, expands on this notion of “tactful display” in their guidelines for the display of human remains by asserting that human remains should only be displayed if a display could not be made equally effectively in any other way, and is accompanied by sufficient explanatory material [9]. Finally, ICOM guidelines go on to say that it is inadvisable to display material of “questionable origin [as] such displays … can be seen to condone … the illicit trade in cultural property” [8]. In the instances where consent could not be obtained for the objects on display, the answer to whether it is ethically permissible to display said objects should be determined by the manner in which they were collected and whether the remains have a connection to living people [8].

Although these guidelines do not specify what they mean by “professional standards,” given that the Cushing Center is considered a medical exhibit, and housed in a medical institution, it is reasonable to apply the standards set forth by the medical profession when considering the presentation of human remains. It is common for human remains to be used for educational purposes at medical schools. However, they are always presented to students with significant context. Moreover, they maintain the same rights to confidentiality that their donor held while living. Specifically, the donor must provide consent and is ensured of confidentiality after their donation is received. Consequently, this paper argues that curators of medical exhibits should maintain the same standards upheld by physicians in clinical training and practice. Taken together with the standards set forth by ICOM and DCMS, medical exhibits should: 1) Maintain confidentiality of donors whose human remains are displayed in exhibits; 2) Provide context for each depiction of human pathology so as to protect the donor and to curb viewer misinterpretation; and 3) Obtain consent from donors prior to exhibition; if consent cannot be obtained, and connections to the living have not been identified, medical exhibitions should acknowledge the history of specimen acquisition in their exhibition.

Preserving Confidentiality and Context Post Mortem

Trust and confidentiality are foundational to the physician-patient relationship. This consideration, I suggest, should extend post mortem. Consistent with this idea, the medical curriculum taught at Yale (and other medical schools) heavily safeguards the identities of the donors of the human remains studied in anatomy and pathology courses. In contrast, the brains on display at the Cushing Center are each labeled with the name of the patient. And while some may argue a cadaver used in an anatomy course is more easily identifiable than a brain, the fact remains that we protect the identity of all owners of tissue samples used in medical education regardless of how identifiable they might be. In effect, the practices of the Cushing Center are inconsistent with current medical pedagogy, and serve to send a conflicting message to viewers regarding the value of patient confidentiality.

Within the Cushing exhibit, patients are further made identifiable by their photographs, where many are naked and some are obviously in pain. It is possible that the display of these images were an attempt made by the curators to humanize the exhibit by putting faces to the pathologies encased in the jars. However, there are no explanations or descriptions for the photographs to connect them to their assigned pathological specimen, effectively highlighting the images of the ill and disabled as unexpected, unfamiliar, or novel. Not contextualizing these images consequently “validates curiosity and authorizes public staring at bodies departed from the ordinary” [7]. Public gaze is never innocent, and human remains and images acquire new meanings as they are developed and presented by different curators [10]. Exhibiting these images devoid of context places the patient in a position to be vulnerable to interpretation. Moreover, without their right to confidentiality protected, a patient’s identity is placed in jeopardy post mortem, as their narrative becomes subject to the viewer’s own thoughts and interpretations.

The Health Insurance Portability and Accountability Act’s (HIPAA) formal confidentiality protections did not exist when Dr. Cushing obtained brain samples from his former patients. Even if it did, it only guarantees physician-patient confidentiality 50 years post mortem. Since it has been over 50 years since Dr. Cushing built his collection, there is no illegality in disclosing identifying information, such as diagnosis and health history, by today’s legal standards. This information might even be valuable for researchers in need of samples for a given pathology. In the case of the Cushing Center, genetic information on rare brain pathology has been obtained using Dr. Cushing’s brains. And while these findings will help refine our understanding of those pathologies, publications still use pseudonyms to conceal the identities of the original donors and present their images with significant context [11]. This might be for the reasons outlined above: the disclosure of an individual’s name and image without context might reduce their identity to their illness post mortem. Thus, while we may not be bound by the law in all cases of patient confidentiality post mortem, I argue that ethically we, as medical professionals, are obligated to protect their right to confidentiality indefinitely. Moreover, we are obligated to demonstrate that imperative to viewers by protecting the identities of former patients at all levels of medical education: from anatomy cadavers to the brains in the Cushing Center. Given this, I suggest that the identities of former specimen owners should be concealed, and both the brains and images be presented with adequate description so as to more clearly define the display for the viewer.

Considering Consent Prior to Exhibition

Consent is also foundational to the physician-patient relationship, and implicit to the concept of patient autonomy. Consequently, it should be expected that an individual has provided consent prior to the display of their human remains in museum exhibitions. Earlier in this paper, I raised concerns about the methods Dr. Cushing used to acquire the brains now displayed in the Cushing Center. Regardless of the methods used by Dr. Cushing to acquire the brains, it should be noted that even if the majority of patients gave Dr. Cushing permission to acquire their brains post mortem for his personal study, there seems to be no evidence that any of his patients consented to the display of their remains to the public. We should not expect there to be, as Dr. Cushing did not create the exhibition for public use—YSM did. Consequently, the onus is on YSM to display the brains in a manner that addresses the historical wrongs committed by Dr. Cushing in acquiring the brains.

One possible way to do this would be to acknowledge the historical context and potential ethical pitfalls in the initial acquisition of the brains and the exhibit as a whole, and make that a part of the display. Another way would be to allow audiences into the exhibit only with a trained guide who would discuss these points during their presentation of the exhibit. A group of scholars put it best when discussing the exhibition of human remains from the private collection of surgeon Dr. John Hunter: “Hunter’s actions were immoral by modern standards, but apologizing for the deeds of others long dead just salves the consciences of the living and has no effect on the deceased. We cannot change the past, but we can learn from it [12]”. Though Dr. Cushing’s actions may be considered immoral by modern standards, we can learn from his past mistakes by refusing to perpetuate them in the Cushing Center.

Conclusion and Outlook

There is no denying Dr. Cushing’s valuable medical legacy. However, we should not overlook his path to discovery nor the ethical pitfalls of an exhibit honoring him without acknowledging this history. As members of the medical community, it is our responsibility to continually evaluate and challenge the ways in which we look upon the bodies of those who are ill. And while the ethical standards of Dr. Cushing’s time differed from ours today, we should not use past standards to justify current practice. Rather, we should periodically reevaluate this exhibit, and exhibits like it, in the light of contemporary standards. Exhibitions that portray both human specimens and images walk a fine line between informative and exploitative. Thus, we must rethink the ways in which we curate medical exhibits, to ensure that they do not misrepresent their featured subjects, to respect patient privacy, and to model that respect for viewers who may come in contact with the exhibit.

In order to meet this standard, I have recommended a general ethical framework curators of medical exhibitions should use that emphasizes the continuation of the principles that underlie the doctor-patient relationship post mortem. To implement these standards, I have recommended changes to the Cushing Center. First, labels with names of each patient should be obscured or entirely removed from their corresponding jars. Second, images of patients should be presented with didactic panels describing the pathology depicted in each picture for context. And finally, curators should incorporate discussions of consent and exhibition ethics into their tours of the Cushing Center.

In sum, medical exhibitions can engage in ethical display of human remains by obscuring the identities of donors, providing context in the form of formal descriptions for all pieces included in the exhibit, and by ensuring informed consent of donors prior to exhibition. In the cases where consent was not (or cannot be) obtained, a discussion of the historical acquisition of specimens on display should be included in the exhibit. In upholding these standards, medical exhibitions can more effectively model the sanctity of the doctor-patient relationship in both life and death.

Glossary

YSM

Yale School of Medicine

ICOM

International Council of Museums

DCMS

Department for Digital, Culture, Media and Sport

HIPAA

Health Insurance Portability and Accountability Act