Ethical Imperatives for Working With Diverse Populations in Digital Research

被引：2

作者：

Herington, Jonathan ^{[1
,5
]}

Connelly, Kay ^{[2
,3
]}

Illes, Judy ^{[4
]}

机构：

[1] Univ Rochester, Dept Hlth Humanities & Bioeth, Rochester, NY USA

[2] Indiana Univ, Dept Informat, Bloomington, IN USA

[3] Michigan State Univ, Coll Engn, E Lansing, MI USA

[4] Univ British Columbia, Dept Med, Div Neurol, Neuroeth Canada, Vancouver, BC, Canada

[5] Univ Rochester, Dept Hlth Humanities & Bioeth, Box 676 601 Elmwood Ave, Rochester, NY 14642 USA

来源：

JOURNAL OF MEDICAL INTERNET RESEARCH | 2023年 / 25卷

基金：

加拿大健康研究院; 美国国家科学基金会; 加拿大自然科学与工程研究理事会; 美国国家卫生研究院;

关键词：

digital health research; justice; research ethics; diversity; engagement; research participants; participatory; SOCIAL VALUE REQUIREMENT; HEALTH; CONSENT; RISKS;

D O I：

10.2196/47884

中图分类号：

R19 [保健组织与事业（卫生事业管理）];

学科分类号：

摘要：

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.

引用

页数：11

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