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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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


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.

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 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.

Evaluation Governance, Research ethics, Social media, Ethics Internet research

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):

He Jiankui’s Germline Editing Ethics Article Retracted by The CRISPR Journal – GEN (Julianna LeMieux – February 2019)0

Posted by Admin in on March 2, 2019

Failure to disclose conflicts of interest was “unacceptable”

Twelve weeks after publishing a perspective on the ethics of gene editing by He Jiankui, PhD, the scientist reportedly responsible for the first gene-edited humans, the editors of The CRISPR Journal have decided to retract the article, GEN can exclusively report.

This isn’t the only bewildering facet of the CRISPR Babies’ story, but it surely comes close to being the strangest.

In late November, the shocking news of the genetically edited twin girls broke out on the eve of the second international Human Genome Editing Summit in Hong Kong. The creation of germline-edited humans was unprecedented and not something that the scientific community had prepared for.

Most of the attention focused on the actions of 34-year-old He, formerly a professor at the Southern University of Science and Technology (SUSTech) in Shenzhen. He’s decision to ignore advice from prominent members of the scientific community and serious questions over the technical and ethical procedures prompted an immediate investigation by Chinese authorities while he was held under house arrest, culminating in his dismissal by SUSTech last month.|

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Move clinical trial data sharing from an option to an imperative – STAT (Rebecca Li | February 2019)0

Posted by Admin in on February 28, 2019

Data from clinical trials have long been locked away, some in this principal investigator’s computer bank, some in that pharmaceutical company’s cloud. For years we have been talking about opening up those vaults and freeing these data. The key has finally turned: Data sharing is becoming the new reality.

From Jan. 1, 2019, onward, the world’s leading medical journals, including the New England Journal of Medicine, the Lancet, Annals of Internal Medicine, BMJ, and thousands more require authors to disclose whether and how they plan to share deidentified raw data from individual participants in their clinical trials. What’s more, researchers wishing to publish in these journals must declare their data-sharing plans in a public registry, such as

It’s a radical departure from where we’ve been. In my former life conducting trials as a scientist in industry and for the National Institutes of Health, when I’d log onto to register a new trial, I didn’t have to give a second thought to if or how I’d be sharing data from the trial. Now all researchers need to think about that from the very beginning, even before the first trial participant is enrolled.

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(JAP) Japanese stem cell fraud leads to a new retraction – Retraction Watch (Adam Marcus | January 2019)0

Posted by Admin in on February 23, 2019

Last March, we reported on the retraction of a 2017 paper in Stem Cell Reports by Kohei Yamamizu and colleagues for widespread fabrication of figures. Turns out the problems were at least five years older than that.

Yamamizu had received a pink slip from his institution, the Center for iPS Cell Research and Application (CiRA), which had put the blame for the misconduct squarely on his shoulders. (The director of the institute, Nobel winner Shinya Yamanaka, also took some of the blame in a public statement in which he said he bore “a strong responsibility for not having prevented research misconduct at our institute.”)

Yamamizu has a new retraction, but this time’s a bit different. Here’s the notice for the paper, “Protein Kinase A Determines Timing of Early Differentiation through Epigenetic Regulation with G9,” which appeared in Cell Stem Cell in June 2012 (Yamanaka was not a co-author on either study).  Although the statement acknowledges the internal investigation, it doesn’t mention misconduct or name Yamamizu:

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