RECONSIDERING THE VALUE OF CONSENT IN BIOBANK RESEARCH
RECONSIDERING THE VALUE OF CONSENT IN BIOBANK RESEARCH
复制标题
DOI：
10.1111/j.1467-8519.2009.01749.x
复制
发表时间：
2011-03-01
期刊：
影响因子：
2.2
通讯作者：
McNamara, Beverley
中科院分区：
文献类型：
--
作者：
Allen, Judy;McNamara, Beverley
长期研究的生物库对同意参与的法律和伦理有效性构成了挑战。已经提出了不同的同意模式来应对其中的一些挑战。本文通过考虑生物库参与者同意的意义和价值，为这一讨论做出了贡献。来自定性研究的经验数据被用来提供参与者对同意过程的看法，并证明，尽管对研究的理解有限，同意为研究参与者提供了一定程度的控制和他们所珍视的一种自我决定形式。参与被认为是一个负责任的公民的道德行为，它提供了自我认同的强化。同意象征着对研究人员和研究机构的信任，他们将生物库用于公共利益。论文认为，同意继续在生物库的参与中发挥重要作用，参与者的观点应该为修改同意程序的建议提供参考。
Biobanks for long-term research pose challenges to the legal and ethical validity of consent to participate. Different models of consent have been proposed to answer some of these challenges. This paper contributes to this discussion by considering the meaning and value of consent to participants in biobanks. Empirical data from a qualitative study is used to provide a participant view of the consent process and to demonstrate that, despite limited understanding of the research, consent provides the research participants with some level of control and a form of self determination that they value. Participation is framed as a moral act of a responsible citizen providing reinforcement of self identity. Consent symbolizes the trust invested in researchers and research institutions to use the biobank for the public good. The paper argues that consent continues to play an important role in biobank participation and that a participant view should inform proposals to modify consent processes.