Putting Patients Online
The Historical Value embedded in Clinical Photographs
While family photographs foster recognition of loved ones and prompt the recollection of precious memories, clinical photographs have a fundamentally different objective – namely, to ensure a disinterested experience of disease. By directing a viewer's gaze towards purely clinical ends, "the utility of the images can become more important than the subject" (Berle, 2008). In other words, photographs of this kind objectify the human beings they depict.
But what happens when patient photographs are no longer needed for the clinical record or used to educate student doctors? When this material loses its clinical value, it appears to gain a new kind of status as historical artefact. This is because images of this kind offer engagements beyond the medical terrain. As a 'slice in time' they provide a window into a place and an experience that we no longer have access to, they offer clues to historical clinical procedures, hospital protocols and equipment, and they indicate the dominance of certain diseases at certain times in history.
Unlike written administrative documents that may provide similar information, clinical photographs also offer hints about patients – who they were, how they were handled, and even (at times) how they may have felt. For Caroline Bressey images like this thus allow histories of otherwise invisible individuals to come to light, for experiences, identities, and lives that would otherwise remain unknown to be spoken (Bressey, 2011). They also allow us to look at patients diagnosed with stigmatising disease like leprosy, syphilis, or (more recently) HIV/Aids not as 'sick' or 'diseased' but as individuals with rich emotional lives.
The Problem with Clinical Photographs as 'historical artefact'
Even historical patient photographs remain of ethical concern because these images hold sensitive details, content that could infringe upon the rights of those depicted. Patients are at risk of being exposed to the gaze of non-medical persons, whose intention may not be that of the 'greater good' associated with clinical teaching. Indeed, this interest may be (at best) gratuitous or (at worst) morbid. Indeed, this lay fascination with patient photographs is easily compared to a fascination with other kinds of images of suffering peoples that are both victims of their situation (war, famine, or bodily harm) and victims of the camera.
Clinical photography is used to record disease, dysfunction and trauma […] [it] evokes an invasion of privacy […] because it reveals particularities that people would rather keep hidden (Berle, 2008)
For Susie Linfield, however, these fears about exposure and victimisation are not really about shielding those depicted; instead, they are there to keep viewers from inappropriate enjoyment – to guard against those who look from finding pleasure "in all the wrong places" (Linfield, 2010). But in condemning the everyday internet surfer of voyeurism it becomes easy to forget the necessary objectification performed by medical professionals in order to diagnose and treat patients on a day-to-day basis. In addition, it denies the fascination and strange enjoyment that even clinicians themselves experience when looking at patient photographs. As medical historian Michael Sappol has said, the notion that "we don't have the right" to look at clinical images is counter-intuitive to the "want to see" (Sappol, 2017).
Patient Turned Pathology
In an attempt to safeguard a patient’s right to privacy, clinical photographs have historically undergone a degree of censorship to minimize identifiable features whenever possible. The concern lies chiefly in the question of informed consent and the safeguarding of Human Rights (Te Hennepe, 2016), and today the production and publishing of clinical photographs are regulated by various protocols.
Today, without informed consent, a clinical photograph must stay confidential and be treated as an extension of the patient's medical record (Berle, 2008; Koch & Larrabee 2013). Concerns and questions about the nature of an individuals ability to express consent thus remain - particularly with regards to vulnerable research subjects including children and mentally disabled adults (Moumjid & Callu, 2003). But contemporary guidelines were only beginning to be introduced in the 1970s (Te Hennepe, 2016), and many images produced before this time were thus taken and circulated without such consideration.
The result of uncertainty regarding informed consent has been the use of eye-blocks or other 'masking' techniques in an aim to render patients anonymous. However, while this manner of censorship has been done to protect patients, it has been shown to be largely ineffective at safeguarding identity (Koch & Larrabee, 2013; Lakdawala et al, 2012). However, beyond the failure of this method to prevent recognition, it has unintended detrimental effects.
Too often, the policing of historical photographs is used to keep non-medical viewers away, to protect professional privilege and a self-congratulatory culture of professional discretion in the name of protecting the privacy and modesty of medical “subjects” who are long dead. But who is really being protected? (Sappol, 2017)
Cropping, blacking out, or blurring patient photographs affects both the authenticity of patient photographs (as historical artefacts) and the manner in which patients depicted are perceived by those who look. Anonymising strategies like eye-blocks simultaneously dehumanise those on display and encourage a single way of looking at the patient: as a clinical object rather than as the person. The act of censoring such images heightens this effect: by focusing attention solely towards the signs of disease, patients become little more than medically useful ‘things’. And in doing away with identifying features of the face, those depicted are experienced as ever less human – offering an emotional distance between the medical professionals or laymen (who look) and the patients (who are looked at).
Identifying features make patients recognisable and prevent them from being experienced as mere evidence of pathology to be deciphered or mocked. As seen in the four examples below (all of the same patient featured in the SAMJ article) it is easiest to identify with and feel empathy for the patient in the first, uncensored version.
Anonymity and our Collection
In our collection, most of the patient's faces are visible and very little appears to have been done to censor their features. This is likely because, historically, it was not common practice to do so. Such photographs were often produced for closed use (for clinical recordkeeping and teaching), although many of them can be found in local medical journals of the 20th century.
Yet, despite the general lack of attention paid to safeguarding anonymity in our collection, there are cases where attention has been paid to conceal patient identity by covering, omitting, or otherwise masking the face. As these images show, medical staff, darkroom attendants, and even the patients themselves had a hand in this process. This was likely carried out as a courtesy and done only when requested (Peres et al, 1996).
A Balancing Act
Historical clinical photographs pose questions as to secrecy, censorship, consent, the ethics of display, the right to privacy, as well as the freedom of information and the rights of ownership. Considering the above, we at the UCT Pathology Learning Centre have taken an approach that tries to balance both considerations of patient privacy as well as research access and freedom to information. The physical version of our photographic collection is wholly open for research purposes but we have taken a fairly conservative approach to making these documents available online.
A digital description of our entire collection of surgical photographs is available here. However, visual examples have only been provided so long as these documents do not reveal the identity of the patient depicted. Rather than using masking strategies, we have chosen to wholly omit these images from our digital database following a 100-year 'living memory' lifespan as suggested by the EU Data Protection Act of 1998 (Wakely & Dakin, 2015). As a clinical collection, images showing explicit nudity have not been omitted. And in cases where the identifying features of patients have already been publically revealed (such as in the SAMJ or other open access sources), we have decided to feature the original, uncensored images as part of our curated exhibits.
It is our opinion that this material should not be taboo. Rather, much like other visual artefacts, historical clinical photographs have stories to tell - of South Africa's collective past as well as of personal experience. By carefully framing these images on this site, we hope to offer a respectful engagement with our material to showcase their value beyond the medical field.
Franchitto N, Gavarri L, Dédouit F, Telmon N, Rougé D. Photography, patient consent and scientific publications: medicolegal aspects in France. Journal of Forensic and Legal Medicine. 2008; 15: 210-2.