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.
In the past few years, the subject of AI rights-the thesis that AIs, robots, and other artefacts (hereafter, simply 'AIs') ought to be included in the sphere of moral concern-has started to receive serious attention from scholars. In this paper, I argue that the AI rights research program is beset by an epistemic problem that threatens to impede its progress-namely, a lack of a solution to the 'Hard Problem' of consciousness: the problem of explaining why certain brain states give rise to experience. To motivate this claim, I consider three ways in which to ground AI rights-namely: superintelligence, empathy, and a capacity for consciousness. I argue that appeals to superintelligence and empathy are problematic, and that consciousness should be our central focus, as in the case of animal rights. However, I also argue that AI rights is disanalogous from animal rights in an important respect: animal rights can proceed without a solution to the 'Hard Problem' of consciousness. Not so with AI rights, I argue. There we cannot make the same kinds of assumptions that we do about animal consciousness, since we still do not understand why brain states give rise to conscious mental states in humans.
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