与数字研究中的不同人群合作的伦理准则。
Ethical Imperatives for Working With Diverse Populations in Digital Research.
机构信息
Department of Health Humanities and Bioethics, University of Rochester, Rochester, NY, United States.
Department of Informatics, Indiana University, Bloomington, IN, United States.
出版信息
J Med Internet Res. 2023 Sep 18;25:e47884. doi: 10.2196/47884.
Digital research methodologies are driving a revolution in health technology but do not yet fully engage diverse and historically underrepresented populations. In this paper, we explore the ethical imperative for such engagement alongside accompanying challenges related to recruitment, appreciation of risk, and confidentiality, among others. We critically analyze existing research ethics frameworks and find that their reliance on individualistic and autonomy-focused models of research ethics does not offer adequate protection in the context of the diversity imperative. To meet the requirements of justice and inclusivity in digital research, methods will benefit from a reorientation toward more participatory practices.
数字研究方法正在推动医疗技术的革命，但尚未充分吸引多样化和历史上代表性不足的人群。本文探讨了这种参与的道德必要性，以及与之相关的伴随挑战，包括招募、风险评估和保密性等。我们批判性地分析了现有的研究伦理框架，发现它们对研究伦理的个人主义和自主为中心的模式的依赖，在多样性要求的背景下并不能提供充分的保护。为了在数字研究中满足正义和包容性的要求，方法将受益于向更具参与性的实践的重新定位。
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