Anane-Sarpong Evelyn, Wangmo Tenzin, Sankoh Osman, Tanner Marcel, Elger Bernice Simone
Dev World Bioeth. 2018 Jun;18(2):98-108. doi: 10.1111/dewb.12138. Epub 2016 Dec 22.
Existing ethics guidelines, influential literature and policies on ethical research generally focus on real-time data collection from humans. They enforce individual rights and liberties, thereby lowering need for aggregate protections. Although dependable, emerging public health research paradigms like research using public health data (RUPD) raise new challenges to their application. Unlike traditional research, RUPD is population-based, aligned to public health activities, and often reliant on pre-collected longitudinal data. These characteristics, when considered in relation to the generally lower protective ethico-legal frameworks of the Global South, including Africa, highlight ethical gaps. Health and demographic surveillance systems are examples of public health programs that accommodate RUPD in these contexts. We set out to explore the perspectives of professionals with a working knowledge of these systems to determine practical ways of appropriating the foundational principles of health research to advance the ever growing opportunities in RUPD. We present their perspectives and in relation to the literature and our ethical analysis, make context relevant recommendations. We further argue for the development of a framework founded on the discussions and recommendations as a minimum base for achieving optimal ethics for optimal RUPD in the Global South.
现有的伦理准则、有影响力的文献以及关于伦理研究的政策通常聚焦于从人类身上实时收集数据。它们强化个人权利和自由，从而降低了对总体保护的需求。尽管可靠，但诸如利用公共卫生数据进行研究（RUPD）这样新兴的公共卫生研究范式对其应用提出了新挑战。与传统研究不同，RUPD是以人群为基础的，与公共卫生活动相一致，并且常常依赖预先收集的纵向数据。当结合包括非洲在内的全球南方总体上较低的保护性伦理法律框架来考虑这些特征时，就凸显出了伦理差距。健康与人口监测系统就是在这些背景下接纳RUPD的公共卫生项目的例子。我们着手探讨对这些系统有实际工作了解的专业人员的观点，以确定采用健康研究基本原则的切实可行方法，从而推动RUPD中不断增加的机会。我们呈现他们的观点，并结合文献以及我们的伦理分析，提出与背景相关的建议。我们进一步主张，应基于这些讨论和建议制定一个框架，作为在全球南方实现RUPD最佳伦理的最低限度基础。
