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Privacy revisited? Old ideals new realities and their impact on biobank regimes

机译:重新访问隐私?旧的理想新的现实及其对生物库制度的影响

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摘要

Biobanks, collecting human specimen, medical records, and lifestyle-related data, face the challenge of having contradictory missions: on the one hand serving the collective welfare through easy access for medical research, on the other hand adhering to restrictive privacy expectations of people in order to maintain their willingness to participate in such research. In this article, ethical frameworks stressing the societal value of low-privacy expectations in order to secure biomedical research are discussed. It will turn out that neither utilitarian nor communitarian or classical libertarian ethics frameworks will help to serve both goals. Instead, John Rawls’ differentiation of the “right” and the “good” is presented in order to illustrate the possibility of “serving two masters”: individual interests of privacy, and societal interests of scientific progress and intergenerational justice. In order to illustrate this counterbalancing concept with an example, the five-pillar concept of the German Ethics Council will be briefly discussed.
机译:收集人体标本,病历和与生活方式有关的数据的生物库面临着相互矛盾的任务:一方面通过易于进行医学研究来为集体福祉服务,另一方面则遵循人们对隐私的严格期望。为了保持他们参与此类研究的意愿。在本文中,讨论了强调低隐私期望的社会价值以确保生物医学研究的伦理框架。事实证明,功利主义,共产主义或古典的自由主义道德框架都不会帮助实现这两个目标。取而代之的是,约翰·罗尔斯(John Rawls)对“正确”和“良好”的区分,是为了说明“为两个主人服务”的可能性:个人隐私利益,科学进步和代际正义的社会利益。为了举例说明这种平衡概念,将简要讨论德国道德理事会的五支柱概念。

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