This is a longer version of a letter we published in The Lancet Global Health (Tam CC, Offeddu V. Preserving dignity and anonymity at scientific conferences. Lancet Global Health 2017;5(4):e398).
You can access the published version here.
Numerous guidelines exist to encourage the proper conduct and reporting of medical research. The Helsinki Declaration1, on which most ethical research norms are based, includes provisions to safeguard the health, safety, autonomy, and privacy of medical research participants. Other guidelines, such as the Recommendations for the Conduct, Reporting, Editing, and Publication of Scholarly Work in Medical Journals2, by the International Committee of Medical Journal Editors (ICMJE), provide additional guidance on how research should be reported in scientific journals. But in the main, these norms are not deemed to apply equally to other forms of research reporting, such as presentations at scientific conferences. Particularly worrying is a trend in the use of photographic images that we believe represents violations of patients’ trust and privacy. At a recent, major international conference, for example, we were concerned by the gratuitous use of photographic depictions of Ebola- and Zika-affected patients, as well as refugees, in purportedly scientific presentations. The majority of these images were not directly relevant to the scientific content of the presentation and many included minors. Rather than provide scientific context, these images were commonly aimed at eliciting an emotional response or ‘connecting’ with the audience. In no instance was it made clear whether the photographs were taken and used with the subjects’ consent.
Researchers should show restraint, respect and empathy when considering whether to use identifying images in scientific presentations. Such photographs, often involving vulnerable groups, are taken by researchers and medical response teams from a position of power, and individuals, particularly children, who are in unfortunate situations not by choice, may have limited agency to consent. This, however, does not constitute a waiver of an individual’s right to choose how their images are used, nor does it absolve researchers from the responsibility of using the images fairly, appropriately and tastefully. We believe that context is important. An image depicting the living conditions within a refugee camp may be relevant and informative in a presentation about the challenges of delivering health and preventive services in this setting. An image of a child refugee in a talk about the variation in antibiotic resistance genes among migrant populations is not. Unfortunately, recent infectious disease emergencies and the increasing importance of migrant health appear to have given researchers licence to use images of affected individuals to promote the global importance of their work, to raise their caché among their peers, and to give an air of exoticism to their presentations. We find this to be both an egregious breach of individuals’ dignity and an unhelpful way to promulgate harmful stereotypes about vulnerable populations in low-resource settings. We firmly believe that most researchers would not find it acceptable to show similar images of minors affected by outbreaks in high-income settings. Rather, the value of one’s work should be evident from the scientific content of the presentation and its demonstrable impact.
Current guidance, although not aimed specifically at scientific presentations, cautions researchers on the appropriate use of images. For example, the ICMJE declaration states2:
“Patients have a right to privacy that should not be violated without informed consent […]
Nonessential identifying details should be omitted. Informed consent should be obtained if there is any doubt that anonymity can be maintained. For example, masking the eye region in photographs of patients is inadequate protection of anonymity […]
When informed consent has been obtained, it should be indicated in the published article.”
Similar norms exist in the media. For example, the National Press Photographers’ Association’s code of ethics3 provides the following guidance:
“Be complete and provide context when photographing or recording subjects. Avoid stereotyping individuals and groups. Recognize and work to avoid presenting one’s own biases in the work.
Treat all subjects with respect and dignity. Give special consideration to vulnerable subjects and compassion to victims of crime or tragedy. Intrude on private moments of grief only when the public has an overriding and justifiable need to see.”
It is now common practice for speakers at conferences to declare conflicts of interest. We call on conference organizers to develop similar guidelines for the use of images in presentations. Current research ethics and reporting guidelines provide much of the framework necessary to determine appropriate use of images and other media. Where there is doubt, identifying images should be avoided. Instead, the subject’s own words, quoted with permission, can be equally effective, while giving individuals agency to describe their condition without being made into a spectacle.
Clarence C Tam1,2
1Saw Swee Hock School of Public Health, National University of Singapore, Singapore
2London School of Hygiene & Tropical Medicine, London, United Kingdom
1 World Medical Association. Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects. 2013. http://www.wma.net/en/30publications/10policies/b3/ (accessed Nov 10, 2016).
2 International Committee of Medical Journal Editors. Recommendations for the Conduct, Reporting, Editing, and Publication of Scholarly work in Medical Journals. 2014. http://www.icmje.org/recommendations/ (accessed Nov 10, 2016).
3 Association NPP. Code of Ethics. 1995. https://nppa.org/code_of_ethics (accessed Nov 10, 2016).