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Animal Ethics Human Research Ethics Research Integrity

AI, big data, and the future of consent (Papers: Adam J. Andreotta, et al | August 2021)

Posted by Dr Gary Allen in Human Research Ethics on September 6, 2021
Keywords: Australia, Bioethics, Biomedical, Consent, Ethical review, Human research ethics, Protection for participants, Research ethics committees, Respect for persons, Social Science

The Linked Original Item was Posted On August, 30 2021

A digital graphic representation of big data

This fascinating open access paper that was published at the end of August 2021 reflects upon the tension between big data research and the ethical principles that guide the ethical design, conduct and review of human research (looking from within the frame of research in Australia).  There is a particular discussion about the tension between biomedical thinking and research practises in areas such as the social sciences.  We have included links to 16 related readings.

Abstract
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.

Keywords
Big data, AI, Privacy, Informed consent, Moral responsibility

Andreotta, A.J., Kirkham, N. & Rizzi, M. (2021) AI, big data, and the future of consent. AI & Society. https://doi.org/10.1007/s00146-021-01262-5
Publisher (Open Access): https://link.springer.com/article/10.1007/s00146-021-01262-5

AI, big data, and the future of consent - AI & SOCIETY
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 operational…

Related Reading

The challenges of open access data (Carol Brayne, et al | February 2022)

Big Data and National Security: A Guide for Australian Policymakers – Lowy Institute (Miah Hammond-Errey | February 2022)

(Switzerland) The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study (Papers: Agata Ferretti, et al | November 2021)

Advancing data-intensive research in Australia – Australian Academy of Science (October 2021)

Digital Ethics in Higher Education: 2020 – BecauseReview (John O’Brien | May 2020)

The battle for ethical AI at the world’s biggest machine-learning conference – Nature (Elizabeth Gibney | January 2020)

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