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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

(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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Read the rest of this discussion piece

Academic Behind Cambridge Analytica Data Mining Sues Facebook for Defamation – New York Times (Matthew Rosenberg | March 2019)0

Posted by Admin in on March 24, 2019
 

WASHINGTON — The academic who helped Cambridge Analytica vacuum up private information from tens of millions of Facebook profiles sued the social media giant on Friday, arguing that the company defamed him when it claimed he had lied about how the data was going to be used.

Since the full scope of Cambridge Analytica’s data mining was revealed last year, Facebook has repeatedly tried to shift blame for the privacy breach onto the academic, Aleksandr Kogan. Facebook executives — including the chief executive, Mark Zuckerberg — have said Mr. Kogan told Facebook that the data was for academic purposes when it was being collected for use in political campaigns.

Mr. Kogan, 32, a former psychology professor, used a quiz app to collect the data, and has insisted that the fine print accompanying his app said the information could be used commercially. That was an outright violation of Facebook’s rules at the time, but the company does not appear to have regularly checked that apps were complying.

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The Ethics Ecosystem: Personal Ethics, Network Governance and Regulating Actors Governing the Use of Social Media Research Data (Papers: Gabrielle Samuel, et al | February 2019)0

Posted by Admin in on March 4, 2019
 

Abstract

While this paper is most obviously relevant to countries without a national standard for non-health human research (ie it might seem more useful for New Zealand) than Australia, it does point to institutions having nuanced guidance about the use of Web 2.0 material.
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AHRECS can provide an in-meeting briefing for our HREC/REC that would be 15min pre-recorded presentation (ppt with embedded audio), a video/phone connection for questions and discussion, and a short briefing note, which includes a recommended reading list. The cost of this activity is AUD 900. Send an email to inmeeting@ahrecs.com to find out more.

This paper examines the consequences of a culture of “personal ethics” when using new methodologies, such as the use of social media (SM) sites as a source of data for research. Using SM research as an example, this paper explores the practices of a number of actors and researchers within the “Ethics Ecosystem” which as a network governs ethically responsible research behaviour. In the case of SM research, the ethical use of this data is currently in dispute, as even though it is seemingly publically available, concerns relating to privacy, vulnerability, potential harm and consent blur the lines of responsible ethical research behaviour. The findings point to the dominance of a personal, bottom-up, researcher-led, ‘ethical barometer’ for making decisions regarding the permissibility of using SM data. We show that the use of different barometers by different researchers can lead to wide disparities in ethical practice – disparities which are compounded by the lack of firm guidelines for responsible practice of SM research. This has widespread consequences on the development of shared norms and understandings at all levels, and by all actors within the Ethics Ecosystem, and risks inconsistencies in their approaches to ethical decision-making. This paper argues that this governance of ethical behaviour by individual researchers perpetuates a negative cycle of academic practice that is dependent on subjective judgements by researchers themselves, rather than governed by more formalised academic institutions such as the research ethics committee and funding council guidelines.
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Keywords
Evaluation Governance, Research ethics, Social media, Ethics Internet research
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Samuel, G., Derrick, G.E. & van Leeuwen, T. Minerva. (2019). “The Ethics Ecosystem: Personal Ethics, Network Governance and Regulating Actors Governing the Use of Social Media Research Data.” Minerva.
Publisher (Open Access): https://link.springer.com/article/10.1007%2Fs11024-019-09368-3

Ethical Considerations When Using Social Media for Evidence Generation (Papers: Gabrielle Berman, et al | 2018)0

Posted by Admin in on August 21, 2018
 

ABSTRACT
There are significant ethical implications in the adoption of technologies and the production and use of the resulting data for evidence generation. The potential benefits and opportunities need to be understood in conjunction with the potential risks and challenges. When using social media to directly engage children and their communities, or when establishing partnerships with these organizations for data collection and analysis, adoption of these technologies and their resultant data should not be exclusively driven by short-term necessity but also by the long-term needs of our younger partners. When engaging with social media and indeed most technology, thoughtfulness, reflection and ongoing interrogation is required. This paper examines the benefits, risks and ethical considerations when undertaking evidence generation: (a) using social media platforms and (b) using third-party data collected and analysed by social media services. It is supplemented by practical tools to support reflection on the ethical use of social media platforms and social media data.

Berman, Gabrielle; Powell, James; Garcia Herranz, Manuel (2018). Ethical Considerations When Using Social Media for Evidence Generation, Innocenti Discussion Papers no. 2018-01, UNICEF Office of Research – Innocenti, Florence https://www.unicef-irc.org/publications/967-ethical-considerations-when-using-social-media-for-evidence-generation-discussion.html

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