支持认知障碍成人参与研究:改革的必要性
Shih-Ning Then1, John Chesterman2, Yuu Matsuyama3
1Australian Centre for Health Law Research, Queensland University of Technology, Brisbane, Queensland.
Journal of law and medicine
|February 2, 2024
概括
对认知障碍成年人的法律和伦理研究要求复杂,不鼓励参与. 需要进行改革,以支持支持的决策,并澄清研究的替代决策.
科学领域:
- 生物伦理学生物伦理学
- 关于残疾人的法律.
- 人权法 人权法 人权法
背景情况:
- 目前对涉及认知障碍的成年人进行研究的法律和道德框架存在重大挑战.
- 这些复杂的要求往往阻碍了在这一领域进行重要的研究.
- 现有的法规不足以促进认知障碍患者积极参与参与研究的决策.
研究的目的:
- 分析当前对涉及认知障碍成年人的研究的法律和伦理要求的复杂性.
- 倡导支持参与研究的决策支持的法律改革.
- 提议对伦理准则进行改进,以提高人权的遵守和可访问性.
主要方法:
- 对现有的州和领地有关研究伦理和认知障碍的法律进行批判性分析.
- 审查国家卫生和医学研究委员会关于人类研究伦理行为的国家声明.
- 审查与支持和替代决策相关的法律和伦理原则.
主要成果:
- 目前的法律和道德要求过于复杂,造成了研究障碍.
- 没有足够的重视支持认知障碍的成年人做出自己的研究参与决策.
- 现有的法律缺乏明确性,关于任命研究的替代决策者.
结论:
- 州和领地法律需要改革,以便在可行的情况下授权支持参与研究的决策.
- 需要对任命替代决策者的标准和程序进行法律澄清.
- 国家关于人类研究道德行为的声明应该进行改革,以改善人权的遵守和实际应用.
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