The Law School, School of Social Sciences and International Studies, University of Exeter, Exeter EX4 4HY, UK.
Health Promot Int. 2022 Jun 23;37(Supplement_2):ii21-ii34. doi: 10.1093/heapro/daac032.
Participatory research in multiple forms is rapidly gaining ground and stands to provide valuable benefits in the area of health research. Citizen science, an increasingly popular form of participatory research, aims to involve laypersons in knowledge production and, as such, can offer new insights that may not be readily accessible by the traditional scientific research enterprise. Heralded as an advance in the democratization of science, citizen science stands as a potential player in evidence generation. Yet, while citizen science offers advantages through its emphasis on lay participation in uncovering information likely to be pertinent to improving health outcomes, without deliberate attention to pathways to inequity and oversight, some aspects can operate to perpetuate or exacerbate health inequities. Drawing on health disparities literature to assist in identifying possible pathways, this work aims to provide support for greater attention to 'process', which would include active engagement with intersecting inequities as a way of interrupting pathways to health inequity. If citizen science is to be true to its moniker, it cannot be 'equity-neutral' in a society where structural or systemic inequities are present. It must be equity-promoting. In the health context, the concerns of justice evolve into concerns of differential health impacts. To accomplish this, equity and justice, as well as representation and fair process, become critically important. Accordingly, this paper foregrounds proactive commitment to equity by confronting the reality of social inequalities present in a given society and adapting the project accordingly to minimize downstream health inequities.
参与式研究有多种形式,正在迅速发展,并有望在卫生研究领域提供有价值的好处。公民科学是一种越来越受欢迎的参与式研究形式,旨在让非专业人士参与知识生产,因此可以提供传统科研企业不易获得的新见解。公民科学被誉为科学民主化的进步,是产生证据的潜在参与者。然而,虽然公民科学通过强调非专业人士参与发现可能有助于改善健康结果的信息来提供优势,但如果不刻意关注不平等和监督的途径,某些方面可能会导致或加剧健康不平等。本研究借鉴健康差异文献来帮助确定可能的途径,旨在为更多关注“过程”提供支持,这将包括积极参与交叉不平等,以中断健康不平等的途径。如果公民科学要名副其实,在存在结构性或系统性不平等的社会中,它不能“对公平保持中立”。它必须促进公平。在健康方面,正义的问题演变成对不同健康影响的关注。为了实现这一目标,公平和正义以及代表性和公平程序变得至关重要。因此,本文通过正视特定社会中存在的社会不平等的现实,并相应地调整项目以最大限度地减少下游健康不平等,突出了对公平的积极承诺。