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Whitepaper: Practical challenges for researchers in data sharing (David Stuart, et al | September 2018)0

Posted by Admin in on March 4, 2019
 

Whitepaper, survey data and infographic on figshare.com

In one of the largest surveys of researchers about research data (with over 7,700 respondents), Springer Nature finds widespread data sharing associated with published works and a desire from researchers that their data are discoverable.

Foreword

We are in the midst of progress, and potentially exciting change, for open science and open access to research data. The world’s funders are increasingly mandating good data practice, including data management plans and data sharing, and recognising the need for global collaboration on infrastructure and best practice. Across the research community, momentum is gathering in policy, strategy and working groups to achieve a future where research data are widely Findable, Accessible, Interoperable and Reusable (FAIR).

Open science should be about opening up all areas of research. Open access to research data can help speed the pace of discovery and deliver more value for funded research by enabling reuse and reducing duplication. The evidence is there that open data and good data management makes research studies more productive, more likely to be cited and unlocks innovation for the good of society including unexpected new discoveries and economic benefit…

Stuart, D., Grace Baynes, S., Hrynaszkiewicz, I., Allin, K., Penny, D., Lucraft, M & Astell, M. (2018) Whitepaper: Practical challenges for researchers in data sharing. Springer nature
Figshare: https://figshare.com/articles/Whitepaper_Practical_challenges_for_researchers_in_data_sharing/5975011/1
Publisher (Includes media release): https://www.springernature.com/gp/open-research/open-data/practical-challenges-white-paper

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

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 ClinicalTrials.gov.

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 ClinicalTrials.gov 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.

Read the rest of this discussion piece

Research Ethics Policy Note no. 12 – Research Involving Illegal Activities0

Posted by Admin in on February 7, 2019
 

The University of Sheffield Research Ethics Policy Note no. 12
Research Involving Illegal Activities

This is a complex area. There is a long tradition of social science research into illegal activity that has enriched public debate about crime and a range of other public issues. Similarly, researchers in psychology or medicine, for example, might in the course of their research learn about criminal activity. But what is the legal and ethical position of the researcher in such circumstances?

1. LEGAL RESPONSIBILITIES
Researchers have the same legal obligations that they would have in any other context, as citizens or legal residents. As a private member of society, there is, however, no general legal obligation in the United Kingdom to report to the relevant authorities all illegal activity that one observes or learns about.

However, there may be moral obligations to report in the following circumstances:

Access  the policy

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