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Animal Ethics Biosafety 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).Ā  There is a particular discussion about the tension between biomedical thinking and research practises in areas such as the social sciences.Ā  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 ā€˜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

Ethical Issues in Social Science Research Employing Big Data (Papers: Mohammad Hosseini, et al | June 2022)

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)

Eleven tips for working with large data sets – Nature (Anna Nowogrodzki | January 2020)

Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia? (Papers: Mohammad Firdaus Abdul Aziz & Aimi Nadia Mohd Yusof | May 2019)

(US) Safeguards for human studies can’t cope with big data – Nature (Nathaniel Raymond | April 2019)

‘Silicon Valley is ethically lost’: Google grapples with reaction to its new ‘horrifying’ and uncanny AI tech – Financial Post (Mark Bergen | May 2018)

Considering the ethics of big data research: A case of Twitter and ISIS/ISIL (Elizabeth Buchanan | December 2017)

AI Research is in Desperate Need of an Ethical Watchdog – Wired (Sophia Chen | September 2017)

Is it too Late for Big Data Ethics? – Forbes (Kaslev Leetaru | October 2017)

What Is Big Data? A Super-Easy Intro For Everyone – LinkedIn (Bernard Marr | March 2017)

Are Research Ethics Obsolete In The Era Of Big Data? (Papers: June 2016)

Perspectives on Big Data, Ethics, and Society – White Paper (Resource material: Council for Big Data, Ethics, and Society 2016)

Scientists are just as confused about the ethics of big-data research as you – Wired Magazine (Sarah Zhang 2016)

Publicly available data on thousands of OKCupid users pulled over copyright claim – Retraction Watch (Alison McCook May 2016)

Big Data, Little Individual: Considering the Human Side of Big Data (Michael N. Karim et al 2015)

Six Provocations for Big Data (Journal: danah boyd and Kate Crawford, 2011)

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