Dynamic consent: a royal road to research consent?

IF 3.3 2区 哲学 Q1 ETHICS
Andreas Bruns, Eva C Winkler
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Abstract

In recent years, the principle of informed consent has come under significant pressure with the rise of biobanks and data infrastructures for medical research. Study-specific consent is unfeasible in the context of biobank and data infrastructure research; and while broad consent facilitates research, it has been criticised as being insufficient to secure a truly informed consent. Dynamic consent has been promoted as a promising alternative approach that could help patients and research participants regain control over the use of their biospecimen and health data in medical research. Critical voices have focused mainly on concerns around its implementation; but little has been said about the argument that dynamic consent is morally superior to broad consent as a way to respect people's individual autonomy. In this paper, we identify two versions of this argument-an information-focused version and a control-focused version-and then argue that both fail to establish the moral superiority of dynamic over broad consent. In particular, we argue that since autonomous choices are a certain species of choices, it is neither obvious that dynamic consent would meaningfully enhance people's autonomy, nor that it is morally justifiable to act on every kind of consent choice enabled by dynamic consent.

动态同意:通往研究同意的皇家之路?
近年来,随着用于医学研究的生物库和数据基础设施的兴起,知情同意原则受到了巨大压力。在生物库和数据基础设施研究的背景下,针对特定研究的同意是不可行的;虽然广泛的同意有利于研究,但也被批评为不足以确保真正的知情同意。动态同意被认为是一种很有前途的替代方法,可以帮助患者和研究参与者重新控制其生物样本和健康数据在医学研究中的使用。批评的声音主要集中在对其实施的担忧上;但对于动态同意在道义上优于广泛同意作为一种尊重个人自主权的方式这一论点,却鲜有人提及。在本文中,我们指出了这一论点的两个版本--以信息为中心的版本和以控制为中心的版本--然后认为这两个版本都不能证明动态同意在道德上优于广泛同意。特别是,我们认为,既然自主选择是一种特定的选择,那么动态同意既不能明显地有意义地提高人们的自主性,也不能说对动态同意所促成的每一种同意选择采取行动在道德上都是正当的。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Journal of Medical Ethics
Journal of Medical Ethics 医学-医学:伦理
CiteScore
7.80
自引率
9.80%
发文量
164
审稿时长
4-8 weeks
期刊介绍: Journal of Medical Ethics is a leading international journal that reflects the whole field of medical ethics. The journal seeks to promote ethical reflection and conduct in scientific research and medical practice. It features articles on various ethical aspects of health care relevant to health care professionals, members of clinical ethics committees, medical ethics professionals, researchers and bioscientists, policy makers and patients. Subscribers to the Journal of Medical Ethics also receive Medical Humanities journal at no extra cost. JME is the official journal of the Institute of Medical Ethics.
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