• A reflection on case reporting in resource-limited settings

      Wind, A (Oxford University Press (OUP), 2019-12-09)
      In 2015, I was in the Democratic Republic of the Congo (DRC), working as a pediatrician with Médecins Sans Frontières (MSF). As had been the case in my two previous assignments with MSF, I encountered many interesting and challenging cases—cases that I had never experienced prior to working in resource limited settings. Contrary to when I work in the USA and have access to extensive laboratory exams and diagnostic testing, in our hospital in the DRC, no such tools were available, and thus I needed to use a whole new level of clinical skills and deductive reasoning. To make clinical management even more challenging, I rarely saw these types of cases written about or published in the medical literature. I was discouraged that although these clinical examples were perfect fodder for medical case discussions, they did not have the ‘components’ required for a traditional case report. In frustration, I wrote the following: ‘The reason why we, those working in “resource limited settings”, do not often attempt to publish case reports is because we don’t often find an answer. We think that published articles and case reports should be neat and clean. That students or colleagues should be able to read a mystery case, try to solve the puzzle, and at the end be rewarded with an answer brought about by some obscure lab or radiology report. But that’s not what happens. The world of medicine in resource limited settings isn’t neat and clean. It’s frustrating and messy. Mystifying and sad. You can come up with a million differentials but ultimately the child, because of, or in despite of, your chosen treatment, makes it. Or doesn’t make it. And you never get an answer. You don’t learn. And you can try to look in the literature, but the research will talk about IGF1 and MRI and calcium. I can’t even get a cal.ci.um. And so, the mystery disease leads to a mystery death and you are left feeling powerless. And there is not even a take home message.’ I am excited that now with the Oxford Medical Case Reports collaboration, there is a platform to start regaining some power, to start creating a take-home message. There is a platform for collaboration amongst all of us medical professionals working in resource limited settings—a platform to share these unique cases to perhaps discover that they are not so unique at all. They are just not published.
    • Research Ethics and International Epidemic Response: The Case of Ebola and Marburg Hemmorrhagic Fevers

      Calain, P; Fiore, N; Poncin, M; Hurst, S; Medecins Sans Frontieres (Oxford University Press, 2009-08-01)
      Outbreaks of filovirus (Ebola and Marburg) hemorrhagic fevers in Africa are typically the theater of rescue activities involving international experts and agencies tasked with reinforcing national authorities in clinical management, biological diagnosis, sanitation, public health surveillance and coordination. These outbreaks can be seen to be as a paradigm for ethical issues posed by by epidemic emergencies, through the convergence of such themes as: isolation and quarantine, privacy and confidentiality and the interpretation of ethical norms across different ethnocultural settings. With an emphasis on the boundaries between public health investigations and research, this article reviews specific challenges, past practices and current normative documents relevant to the application of ethical standards in the course of outbreaks of filovirus hemorrhagic fevers. Aside from the commonly identified issues of informed consent, and institutional review process, we argue for more clarify over the specification of which communities are expected to share benefits, and we advocate for the use of collective definitions of duty to care and standard of care. We propose new elaborations around existing normative instruments, and we suggest some pathways toward more comprehensive approaches to the ethics of research in outbreak situations.
    • Research ethics review in humanitarian contexts: the experience of the independent ethics review board of Médecins Sans Frontières.

      Schopper, D; Upshur, R; Matthys, F; Singh, J; Bandewar, S S; Ahmad, A; van Dongen, E; Ethics Review Board, Médecins Sans Frontières, Geneva, Switzerland. doris.schopper@bluewin.ch (2009-07-15)
    • Tuberculosis, human rights and ethics.

      Varaine, F (International Union Against Tuberculosis and Lung Disease, 2017-10-01)
    • Why ethics is indispensable for good-quality operational research [Short communication]

      Edginton, M; Enarson, D; Zachariah, R; Reid, T; Satyanarayana, S; Bissell, K; Hinderaker, S G; Harries, A D (The TB Union, 2012-03)