Andreotta Adam J, Kirkham Nin, Rizzi Marco
School of Management, Curtin University, Kent St, Bentley, WA 6102 Australia.
Department of Philosophy, The University of Western Australia, 35 Stirling Hwy, Crawley, WA 6009 Australia.
AI Soc. 2022;37(4):1715-1728. doi: 10.1007/s00146-021-01262-5. Epub 2021 Aug 30.
In this paper, we discuss several problems with current Big data practices which, we claim, seriously erode the role of informed consent as it pertains to the use of personal information. To illustrate these problems, we consider how the notion of informed consent has been understood and operationalised in the ethical regulation of biomedical research (and medical practices, more broadly) and compare this with current Big data practices. We do so by first discussing three types of problems that can impede informed consent with respect to Big data use. First, we discuss the transparency (or explanation) problem. Second, we discuss the re-repurposed data problem. Third, we discuss the meaningful alternatives problem. In the final section of the paper, we suggest some solutions to these problems. In particular, we propose that the use of personal data for commercial and administrative objectives could be subject to a 'soft governance' ethical regulation, akin to the way that all projects involving human participants (e.g., social science projects, human medical data and tissue use) are regulated in Australia through the Human Research Ethics Committees (HRECs). We also consider alternatives to the standard consent forms, and privacy policies, that could make use of some of the latest research focussed on the usability of pictorial legal contracts.
在本文中，我们探讨了当前大数据实践中存在的几个问题，我们认为这些问题严重削弱了知情同意在涉及个人信息使用方面的作用。为了说明这些问题，我们思考了在生物医学研究（以及更广泛的医疗实践）的伦理规范中，知情同意的概念是如何被理解和实施的，并将其与当前的大数据实践进行比较。我们通过首先讨论三类可能阻碍大数据使用方面的知情同意的问题来做到这一点。第一，我们讨论透明度（或解释）问题。第二，我们讨论数据再利用问题。第三，我们讨论有意义的替代方案问题。在本文的最后部分，我们提出了一些解决这些问题的方法。特别是，我们提议将用于商业和行政目的的个人数据的使用置于一种“软治理”的伦理规范之下，类似于澳大利亚通过人类研究伦理委员会（HRECs）对所有涉及人类参与者的项目（如社会科学项目、人类医学数据和组织的使用）进行监管的方式。我们还考虑了标准同意书和隐私政策的替代方案，可以利用一些专注于图形化法律合同可用性的最新研究成果。
