Tansey Catherine M, Anderson James, Boulanger Renaud F, Eckenwiler Lisa, Pringle John, Schwartz Lisa, Hunt Matthew
Humanitarian Health Ethics Research Group, McGill University, Montreal, Quebec, Canada and McMaster University, Hamilton, ON, Canada.
Department of Bioethics, The Hospital for Sick Children, Toronto, ON, Canada.
BMC Med Ethics. 2017 Jun 28;18(1):44. doi: 10.1186/s12910-017-0203-z.
The conduct of research in settings affected by disasters such as hurricanes, floods and earthquakes is challenging, particularly when infrastructures and resources were already limited pre-disaster. However, since post-disaster research is essential to the improvement of the humanitarian response, it is important that adequate research ethics oversight be available.
We aim to answer the following questions: 1) what do research ethics committee (REC) members who have reviewed research protocols to be conducted following disasters in low- and middle-income countries (LMICs) perceive as the key ethical concerns associated with disaster research?, and 2) in what ways do REC members understand these concerns to be distinct from those arising in research conducted in non-crisis situations? This qualitative study was developed using interpretative description methodology; 15 interviews were conducted with REC members.
Four key ethical issues were identified as presenting distinctive considerations for disaster research to be implemented in LMICs, and were described by participants as familiar research ethics issues that were amplified in these contexts. First, REC members viewed disaster research as having strong social value due to its potential for improving disaster response, but also as requiring a higher level of justification compared to other research settings. Second, they identified vulnerability as an overarching concern for disaster research ethics, and a feature that required careful and critical appraisal when assessing protocols. They noted that research participants' vulnerabilities frequently change in the aftermath of a disaster and often in unpredictable ways. Third, they identified concerns related to promoting and maintaining safety, confidentiality and data security in insecure or austere environments. Lastly, though REC members endorsed the need and usefulness of community engagement, they noted that there are significant challenges in a disaster setting over and above those typically encountered in global health research to achieve meaningful community engagement.
Disaster research presents distinctive ethical considerations that require attention to ensure that participants are protected. As RECs review disaster research protocols, they should address these concerns and consider how justification, vulnerability, security and confidentially, and community engagement are shaped by the realities of conducting research in a disaster.
在受飓风、洪水和地震等灾害影响的地区开展研究具有挑战性,尤其是在灾害发生前基础设施和资源就已有限的情况下。然而,由于灾后研究对于改善人道主义应对至关重要,因此提供充分的研究伦理监督非常重要。
我们旨在回答以下问题:1)审查过在低收入和中等收入国家(LMICs)灾害后开展的研究方案的研究伦理委员会(REC)成员认为与灾害研究相关的关键伦理问题是什么?2)REC成员认为这些问题与在非危机情况下开展的研究中出现的问题有何不同?本定性研究采用解释性描述方法开展;对REC成员进行了15次访谈。
确定了四个关键伦理问题,这些问题为在LMICs开展的灾害研究提出了独特的考量,参与者将其描述为在这些背景下被放大的常见研究伦理问题。首先,REC成员认为灾害研究因其具有改善灾害应对的潜力而具有很强的社会价值,但与其他研究环境相比,也需要更高水平的正当理由。其次,他们将脆弱性确定为灾害研究伦理的首要关注点,也是评估研究方案时需要仔细和批判性评估的一个特征。他们指出,研究参与者的脆弱性在灾害后经常发生变化,而且往往是不可预测的。第三,他们确定了在不安全或严峻环境中促进和维护安全、保密和数据安全方面的问题。最后,尽管REC成员认可社区参与的必要性和有用性,但他们指出,在灾害背景下,要实现有意义的社区参与,除了全球卫生研究中通常遇到的挑战之外,还存在重大挑战。
灾害研究提出了独特的伦理考量,需要予以关注以确保参与者得到保护。当REC审查灾害研究方案时,应解决这些问题,并考虑在灾害中开展研究的实际情况如何影响正当理由、脆弱性、安全性和保密性以及社区参与。