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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Guest Post: Encouraging Data Sharing: A Small Investment for Large Potential Gain – Scholarly Kitchen (Rebecca Grant, et al | January 2019)0

Posted by Admin in on April 20, 2019
 

Data sharing is like maths at school.*

Bear with us.

It might seem harder than the other subjects. You might feel your teachers are not very good at explaining it. But if you do not pay attention, you will very quickly find that many real-world skills rely on maths; and you would have benefited from learning the basics as it provides a solid foundation for the rest of your adult life (whether your ambitions are to become an astronaut, a Grandmaster of chess, or simply to balance your personal expenses).

Likewise, data sharing and data management form the foundation of global academic collaboration, discovery and scientific advancement. Sadly, surveys show that academics rarely get formal training in good data management (let alone best practice), and data management is rarely incentivized by institutions. All too often even the basics are ignored, with data ending up languishing on a USB stick or on a paper notepad.

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(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

Genomic Research Through an Indigenous Lens: Understanding the Expectations (Nanibaa’ A. Garrison, et al | August 2019)0

Posted by Admin in on April 2, 2019
 

Abstract

Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples’ engagement with genomic research was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples.

Expected final online publication date for the Annual Review of Genomics and Human Genetics Volume 22 is August 30, 2019. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

Garrison, N. A., Hudson, M., L. Ballantyne, LL., Garba, I. Martinez, A., Taualii, M., Arbour L., Caron, NR. and Rainie, SC. (2019). Genomic Research Through an Indigenous Lens: Understanding the Expectations. Annual Review of Genomics and Human Genetics 20(1)
https://www.annualreviews.org/doi/abs/10.1146/annurev-genom-083118-015434

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