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作为促进公平公正研究框架的合理性问责制。

Accountability for Reasonableness as a Framework for the Promotion of Fair and Equitable Research.

作者信息

Dupras Charles, Dubé Marie-Pierre, Gravel Simon, Haidar Hazar

出版信息

Hastings Cent Rep. 2024 Dec;54 Suppl 2(Suppl 2):S66-S72. doi: 10.1002/hast.4931.

Abstract

Despite increased efforts to ensure diversity in genomic research, the exclusion of minority groups from data analyses and publications remains a critical issue. This paper addresses the ethical implications of these exclusions and proposes accountability for reasonableness (A4R) as a framework to promote fairness and equity in research. Originally conceived by Norman Daniels and James Sabin to guide resource allocation in the context of health policy, A4R emphasizes publicity, relevance of reasons, enforcement, and revision as essential for legitimacy and trust in the decision-making process. The authors argue that A4R is also relevant to resource allocation in research and that, if adequately informed and incentivized by funding agencies, institutional review boards, and scientific journals, researchers are well-positioned to assess data-selection justifications. The A4R framework provides a promising foundation for fostering accountability in genomics and other fields, including artificial intelligence, where lack of diversity and pervasive biases threaten equitable benefit sharing.

摘要

尽管为确保基因组研究的多样性付出了更多努力,但在数据分析和出版物中排除少数群体仍然是一个关键问题。本文探讨了这些排除行为的伦理影响,并提出合理性问责制(A4R)作为促进研究公平性和公正性的框架。合理性问责制最初由诺曼·丹尼尔斯和詹姆斯·萨宾构想,用于指导卫生政策背景下的资源分配,它强调公开性、理由的相关性、执行和修订对于决策过程的合法性和信任至关重要。作者认为,合理性问责制也与研究中的资源分配相关,并且,如果得到资助机构、机构审查委员会和科学期刊的充分告知和激励,研究人员有能力评估数据选择的理由。合理性问责制框架为促进基因组学和其他领域(包括人工智能)的问责制提供了一个有前景的基础,在这些领域,缺乏多样性和普遍存在的偏见威胁着公平的利益分享。

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A roadmap to increase diversity in genomic studies.增加基因组研究多样性的路线图。
Nat Med. 2022 Feb;28(2):243-250. doi: 10.1038/s41591-021-01672-4. Epub 2022 Feb 10.
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Don't ignore genetic data from minority populations.不要忽视少数族裔群体的基因数据。
Nature. 2020 Sep;585(7824):184-186. doi: 10.1038/d41586-020-02547-3.
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Expanded HTA: Enhancing Fairness and Legitimacy.扩大卫生技术评估:增强公平性和合法性。
Int J Health Policy Manag. 2015 Nov 6;5(1):1-3. doi: 10.15171/ijhpm.2015.187.
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The ethics and reality of rationing in medicine.医学资源分配的伦理与现实
Chest. 2011 Dec;140(6):1625-1632. doi: 10.1378/chest.11-0622.
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