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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Technological Support for Peer Review Innovations – Scholarly Kitchen (Jessica Polka | March 2019)0

Posted by Admin in on August 24, 2019
 

The design of critical infrastructure determines what its users can do, and when. For example, the New York City subway system carries 1.7 billion passengers annually, shapes centers of residential and commercial activity, and enables a vibrant culture with its late night service.

Incredibly, it does this with a signaling system that predates World War II that forces trains to be spaced far apart from one another, limiting capacity and causing delays. Upgrading the signaling system is necessary to meet current demands, but it is estimated to cost tens of billions of dollars and would require closing stations on nights and weekends, harming New Yorkers who depend on these services. Thus, the radical (but ultimately necessary) upgrade has been delayed in favor of putting out more urgent fires, for example track damage caused by hurricane Sandy.

Similarly, journal management systems and publishing platforms act as essential infrastructure for scholarly communication. While more nimble than a metropolitan transport network, they nevertheless face challenges in balancing needs for both urgent fixes and aspirational developments. Over the long term, their supported features can shape the nature of scholarly communication, restricting or inspiring innovation.

Peer review innovation

Interest is mounting in modernizing peer review. In just the last year, a variety of new platforms and initiatives have launched: BioMed Central’s In Review, a Wiley, ScholarOne, and Publons collaboration, and independent peer review services linked from both Europe PMC (see the “External Links” tab of these results) and bioRxiv (see the section on “Preprint discussion sites” in this example).

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Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation? (Papers: Dara Hallinan & Michael Friedewald | 2015)0

Posted by Admin in on August 22, 2019
 

Abstract
This article focuses on whether a certain form of consent used by biobanks – open consent – is compatible with the Proposed Data Protection Regulation. In an open consent procedure, the biobank requests consent once from the data subject for all future research uses of genetic material and data. However, as biobanks process personal data, they must comply with data protection law. Data protection law is currently undergoing reform. The Proposed Data Protection Regulation is the culmination of this reform and, if voted into law, will constitute a new legal framework for biobanking. The Regulation puts strict conditions on consent – in particular relating to information which must be given to the data subject. It seems clear that open consent cannot meet these requirements. 4 categories of information cannot be provided with adequate specificity: purpose, recipient, possible third country transfers, data collected. However, whilst open consent cannot meet the formal requirements laid out by the Regulation, this is not to say that these requirements are substantially undebateable. Two arguments could be put forward suggesting the applicable consent requirements should be rethought. First, from policy documents regarding the drafting process, it seems that the informational requirements in the Regulation are so strict in order to protect the data subject from risks inherent in the use of the consent mechanism in a certain context – exemplified by the online context. There are substantial differences between this context and the biobanking context. Arguably, a consent transaction in the biobanking does not present the same type of risk to the data subject. If the risks are different, then perhaps there are also grounds for a reconsideration of consent requirements? Second, an argument can be made that the legislator drafted the Regulation based on certain assumptions as to the nature of ‘data’. The authors argue that these assumptions are difficult to apply to genetic data and accordingly a different approach to consent might be preferable. Such an approach might be more open consent friendly.

Hallinan, D. and M. Friedewald (2015). “Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation?” Life Sciences, Society and Policy 11(1): 1.
Publisher (Open Access): https://lsspjournal.biomedcentral.com/articles/10.1186/s40504-014-0020-9

International Association for the Study of Forced Migration (IASFM) Code of ethics: Critical reflections on research ethics in situations of forced migration0

Posted by Admin in on August 18, 2019
 

Context:
Research with people in situations of forced migration poses particular ethical challenges because of unequal power relations, legal precariousness, extreme poverty, violence, the criminalization of migration, politicized research contexts, the policy relevance of our research and/or dependence on government and non-governmental services and funding. However, Research Ethics Boards (REBs) are not always aware of these particular ethical issues; some countries and institutions do not have REBs; and some kinds of research are not subject to REB approval. In this context of heightened risks of research, and uneven institutional accountability for research ethics, the International Association for the Study of Forced Migration (IASFM) hereby proposes this code of ethics for research with people in situations of forced migration. Similarly to how Indigenous research methodologies incorporate a broad, engaged and critical notion of ethics that recognizes power differentiations and the agency of the participants within exploitive research histories, this document sets forth principles that are starting points for respectful research.1 It is intended to reflect the broad diversity of our membership, including those involved in gathering information – whether in an academic or community setting – as well as those who are asked to take part in research. That being said, we acknowledge that this is not a comprehensive nor exhaustive document, but rather a starting point for active, critical engagement with ethical issues.

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(US) NIH probe of foreign ties has led to undisclosed firings-and refunds from institutions – Science (Jeffrey Mervis | June 2019)0

Posted by Admin in on August 17, 2019
 

An aggressive effort by the National Institutes of Health (NIH) to enforce rules requiring its grantees to report foreign ties is still gathering steam. But it has already had a major impact on the U.S. biomedical research community. A senior NIH official tells ScienceInsider that universities have fired more scientists—and refunded more grant money—as a result of the effort than has been publicly known.

Since August 2018, Bethesda, Maryland–based NIH has sent roughly 180 letters to more than 60 U.S. institutions about individual scientists it believes have broken NIH rules requiring full disclosure of all sources of research funding. To date, the investigation has led to the well-publicized dismissals of five researchers, all Asian Americans, at MD Anderson Cancer Center in Houston, Texas, and Emory University in Atlanta.

But other major U.S. research universities have also fired faculty in cases that have remained confidential, according to Michael Lauer, head of NIH’s extramural research program. And some have repaid NIH “hundreds of thousands of dollars” in grants as a result of rule violations, he says. “I can understand why [the universities] aren’t talking about it,” Lauer says. “No organization wants to discuss personnel actions in a public forum.”

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