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. (shrink)

In addition to data transforming the insurance sector from within, insurance consumers and their behaviour has transformed significantly over the past 20 years from traditional retail to, predominantly, online trading. Data are a fundamental part of how the sector operates, and the use of data in insurance is constantly evolving. This paper aims to explore consumer perceptions about digital privacy and their subsequent motivations to disclose personal data for insurance purposes.,The study uses an exploratory research approach based on in-depth interviews (...) to generate metathemes to provide an understanding of consumer perceptions about digital privacy and data sharing in the insurance sector.,Consumers were extrinsically motivated to disclose data by financial reward and convenience; however, subsequent intrinsic motivations may be an influence on the initial motivations. Consumers perceived transactions as “fair” if they received the expected rewards, retained control of the data, and the data was not unilaterally used to their detriment. Concern for privacy was generally low, provided antecedent conditions were met.,As the study uses an exploration for discovery approach, the main limitation of this study is its small sample. However, this research aimed to identify metathemes and issues that may be the focus of future research in this area and is, therefore, not proposing to suggest strong conclusions and definitive answers.,This paper presents the first empirical research to examine data privacy issues in the UK insurance context. It contributes to knowledge in the areas of motivation, applied ethics and online consumer behaviour in general. (shrink)