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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Guidance for Researchers on the Implications of the General Data Protection Regulation and the Data Protection Act 2018 (Guidance: UCL | May 2018)0

Posted by Admin in on April 30, 2019
 

Introduction
This guidance note has been compiled to provide an overview of data protection key points for researchers, in line with the General Data Protection Regulation (GDPR) and the new UK Data Protection Act 2018. When referring to both, this guidance note will use the term ‘new data protection legislation’.

This document was last updated on 24 May 2018. It may be updated further as relevant guidance on the issues raised is published by the UK Information Commissioner’s Office (ICO).

A. Scope
This guidance applies to researchers who are processing personal data, i.e. information relating to an identified or identifiable living person. Note that ‘processing’ means any operation – collecting, storing, using, transferring, disclosing or destroying – performed on personal data.

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U.S. Public Health Service STD Experiments in Guatemala (1946–1948) and Their Aftermath – Ethics and Human Research (Kayte Spector‐Bagdady Paul A. Lombardo | March 2019)0

Posted by Admin in on April 22, 2019
 

ABSTRACT
The U.S. Public Health Service’s sexually transmitted disease (STD) experiments in Guatemala are an important case study not only in human subjects research transgressions but also in the response to serious lapses in research ethics. This case study describes how individuals in the STD experiments were tested, exposed to STDs, and exploited as the source of biological specimens—all without informed consent and often with active deceit. It also explores and evaluates governmental and professional responses that followed the public revelation of these experiments, including by academic institutions, professional organizations, and the U.S. federal government, pushing us to reconsider both how we prevent such lapses in the future and how we respond when they are first revealed.

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Hopefully most people with an interest in the history of human research ethics will be well aware of the egregious ethical breaches and misdeeds in Guatemala. (If not we’ve included links about the case).  This item appears to raise nothing new. However,  it questions whether merely reporting a breach is sufficient.  Mark Israel considers that question further in his commentary piece in the subscribers’ area.

(US) Safeguards for human studies can’t cope with big data – Nature (Nathaniel Raymond | April 2019)0

Posted by Admin in on April 19, 2019
 

Forty years on from a foundational report on how to protect people participating in research, cracks are showing, warns Nathaniel Raymond.

One of the primary documents aiming to protect human research participants was published in the US Federal Register 40 years ago this week. The Belmont Report was commissioned by Congress in the wake of the notorious Tuskegee syphilis study, in which researchers withheld treatment from African American men for years and observed how the disease caused blindness, heart disease, dementia and, in some cases, death.

This item obviously relates very specifically to the origins of the US human research ethics arrangements and the operation of IRBs, but the questions it poses are salient to Australasia.  The oft repeated statement: “But the information is already published and so is in the public domain and so is exempt”.  Is no longer helpful. We have provided a list of related items.

The Belmont Report lays out core principles now generally required for human research to be considered ethical. Although technically governing only US federally supported research, its influence reverberates across academia and industry globally. Before academics with US government funding can begin research involving humans, their institutional review boards (IRBs) must determine that the studies comply with regulation largely derived from a document that was written more than a decade before the World Wide Web and nearly a quarter of a century before Facebook.
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It is past time for a Belmont 2.0. We should not be asking those tasked with protecting human participants to single-handedly identify and contend with the implications of the digital revolution. Technological progress, including machine learning, data analytics and artificial intelligence, has altered the potential risks of research in ways that the authors of the first Belmont report could not have predicted. For example, Muslim cab drivers can be identified from patterns indicating that they stop to pray; the Ugandan government can try to identify gay men from their social-media habits; and researchers can monitor and influence individuals’ behaviour online without enrolling them in a study.
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The Ethics of Learning Analytics in Australian Higher Education. A Discussion Paper (The University of Melbourne | March 2019)0

Posted by Admin in on April 11, 2019
 

Overview

This project brought together learning analytics experts from across Australia to explore key ethical issues relating to the development and use of learning analytics in higher education. The result of these discussions was a discussion paper that provides an outline of seven ethical principles as well as practical considerations associated with the use of learning analytics.

Objective

The ever-increasing availability of data about student activities in educational environments presents many opportunities for the improvement of learning and teaching through the use of learning analytics. In applying analytics, there is an obligation that educators and institutions ensure that data and analysis techniques are used appropriately. The range of ethical considerations that educational institutions must face is complex, and many institutions are still formulating their approach to ensuring ethical practice in this field.

The objective of this project was to draw together contemporary research and current practice in the area of ethics and learning analytics, and use this to produce a discussion paper that provides guidance to a range of higher education stakeholders including students, educators, researchers, and senior leaders.

Corrin, L., Kennedy, G., French, S., Buckingham Shum S., Kitto, K., Pardo, A., West, D., Mirriahi, N., & Colvin, C. (2019). The Ethics of Learning Analytics in Australian Higher Education. A Discussion Paper. https://melbourne-cshe.unimelb.edu.au/research/research-projects/edutech/the-ethical-use-of-learning-analytics

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