Ethical Considerations in Population Health Research With Vulnerable Communities and the Added Value of Community-Engaged Methodology

Alexandra C Tuggle, D. Crews
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Abstract

Working among vulnerable communities poses unique ethical challenges when conducting biocultural research. When communities face dire poverty and social injustice, simply observing and documenting stressors and related health outcomes may be considered exploitative by vulnerable and already overburdened residents. As biocultural researchers, our responsibility is to work toward solutions addressing differential impacts of social injustice. Here, we highlight work amongst the Comcaac, an indigenous group native to Sonora, Mexico. Today, they experience significant resource insecurity secondary to historical marginalization and structural violence. Employing ethnographic methods (participant observation, focus groups, unstructured and semi-structured interviews), we investigated social and ecological stressors likely affecting members’ health. First, we determined visible themes encompassing resource insecurity (e.g., water, food, power, medicine etc.) and struggles with poverty, racism, and associated feelings of injustice. Through deep engagement, we also discerned community members’ frustrations with what they see as exploitative research – obtaining information but failing to work actively toward solutions or remain invested in participants’ well-being. To begin addressing their most severe issues, we first documented substantial needs within the community, then obtained outside donors and organized a weekly food bank delivery of fresh foods. Now, these are distributed weekly by community leaders in culturally appropriate and locally embedded ways. Thereby, we were able to address an immediate need in a manner that will have continuing impact even while not actively conducting fieldwork. To have real meaning for our research communities, as biocultural researchers we must create ethically based long-term relationships to develop meaningful scholarship.
弱势群体人口健康研究中的伦理考虑及社区参与方法的附加价值
在弱势群体中开展生物文化研究面临着独特的伦理挑战。当社区面临极度贫困和社会不公正时,对于脆弱和已经负担过重的居民来说,仅仅观察和记录压力源和相关的健康结果可能被视为剥削。作为生物文化研究人员,我们的责任是为解决社会不公正的不同影响而努力。在这里,我们重点介绍墨西哥索诺拉的土著团体Comcaac的工作。今天,由于历史边缘化和结构性暴力,他们经历了严重的资源不安全。采用人种学方法(参与者观察、焦点小组、非结构化和半结构化访谈),我们调查了可能影响成员健康的社会和生态压力因素。首先,我们确定了可见的主题,包括资源不安全(例如,水,食物,电力,医药等),以及与贫困,种族主义和相关不公正感的斗争。通过深入参与,我们还发现了社区成员对他们所认为的剥削性研究的不满——获取信息但未能积极寻求解决方案或继续为参与者的福祉投资。为了开始解决他们最严重的问题,我们首先记录了社区内的实际需求,然后获得了外部捐助者,并组织了每周一次的新鲜食品银行。现在,这些书每周都由社区领袖以适合当地文化的方式分发。因此,我们能够以一种即使没有积极开展实地工作也会产生持续影响的方式解决当前需求。作为生物文化研究人员,为了对我们的研究界产生真正的意义,我们必须建立基于伦理的长期关系,以发展有意义的学术研究。
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