The importance of transparency and openness in research data to drive patient benefit—Examples from the United Kingdom

“Key points •Openness in research is discussed in many guises and brings manybenefits and there is a need to join up, share good practice andtalk a common language to make maximum progress.•Importance of open publication as a key step to increasing trustand reducing waste in research.•There is a need to be careful about the language used and it iscrucial that the right safeguards are in place to protect people’spersonal data. Personal data should not be‘open’, and discussingit in this way risks its availability and associated use.•Need to start with trust and involvement of patients and the pub-lic to ensure maximum benefit canflow from data.”

Tracking Science: How Libraries can Protect Data and Scientific Freedom | ZBW MediaTalk

A modern expression states: If you are not paying for the product, you are the product yourself. How can libraries help to prevent tracking in science, thereby protecting the data of the researchers and, in an idealistic sense, scientific freedom? In an interview, Julia Reda reveals the starting points and pitfalls.

LERU Data Statement | LERU

The LERU Data Statement is LERU’s way forward to tackle the increasing dependence on dominant platform companies. Platform companies have become a driving force in the design of public universities’ learning and teaching environments and define and steer universities’ digital architectures through hardware and software technologies. LERU is concerned that this leads to user- and vendor- lock-in.

At the same time, major European data legislation affecting universities has to provide clarity to restore universities’ independence and to help them deliver on their role as keepers of a common culture of knowledge and an agent of new knowledge. LERU worries that universities in the EU are considered equal to market sectors. Universities should be recognised as having a distinct public value and be regarded as critical infrastructures in society.

Therefore LERU is putting forward a number of basic principles in this Data Statement for dealing with data, addressing all stakeholders involved: legislators, digital providers, individuals in universities, universities, and industry. The current position is untenable and drastic action needs to be taken, both practically and in legislation, to restore universities’ independence of action and to help them deliver on their goals in support of knowledge creation for the benefit of society.

Apropos Data Sharing: Abandon the Distrust and Embrace the Opportunity | DNA and Cell Biology

Abstract:  In this commentary, we focus on the ethical challenges of data sharing and its potential in supporting biomedical research. Taking human genomics (HG) and European governance for sharing genomic data as a case study, we consider how to balance competing rights and interests—balancing protection of the privacy of data subjects and data security, with scientific progress and the need to promote public health. This is of particular relevancy in light of the current pandemic, which stresses the urgent need for international collaborations to promote health for all. We draw from existing ethical codes for data sharing in HG to offer recommendations as to how to protect rights while fostering scientific research and open science.




Nightingale Open Science

“Nightingale Open Science is a platform that connects researchers with world-class medical data. We work closely with health systems around the world to create and curate datasets of medical images linked to ground-truth labels. We carefully deidentify the data and make it available for non-profit research on our cloud infrastructure….

Unfortunately, existing medical data with the potential to shed light on these patterns have historically been siloed. By making this data accessible to broad groups of interdisciplinary researchers, we can begin to unlock discoveries that save lives, surfacing previously unknown patterns of disease….”


Senators unveil bipartisan bill requiring social media giants to open data to researchers | TheHill

“Meta and other social media companies would be required to share their data with outside researchers under a new bill announced by a bipartisan group of senators on Thursday. …

The bill, the Platform Accountability and Transparency Act, would allow independent researchers to submit proposals to the National Science Foundation. If the requests are approved, social media companies would be required to provide the necessary data subject to certain privacy protections. …”

Ethics Toolkit – the Canadian Open Neuroscience Platform

“In response to a growing need in the neuroscience community for concrete guidance concerning ethically sound and pragmatically feasible open data-sharing, the CONP has created an ‘Ethics Toolkit’, currently comprised of:


1. The CONP Consent Toolkit


2. The CONP Privacy and De-identification Toolkit

Together, these documents are meant to help researchers identify key elements in the design of their projects that are often required for the open sharing of neuroscience data, such as model consent language and approaches to de-identification….”

Full article: Open science and sharing personal data widely – legally impossible for Europeans?

“A requirement for having a research paper published in many medical journals is that the authors include a data sharing statement. Although the requirement from the International Committee of Medical Journal Editors is not very strict, simply requiring a statement [1], interpretation varies. Some journals essentially require that data must be readily available for other researchers for the paper to be accepted.

While most of us eagerly welcome open science and reuse of data to ensure reproducible science, the EU General Data Protection Regulation (GDPR) provides strong protection of privacy and rather restricts and counteracts open sharing of personal data [2]. Some editors will accept that data are not readily sharable with others than peer reviewers for legal reasons. However, editors of non-European journals will often object to a GDPR-compatible data sharing statement and, consequently and often at the last minute, reject the research paper.

Why is this an issue? How difficult is it for European researchers to share data with researchers in other parts of the world?”

Surveillance Publishing

Abstract:  This essay develops the idea of surveillance publishing, with special attention to the example of Elsevier. A scholarly publisher can be defined as a surveillance publisher if it derives a substantial proportion of its revenue from prediction products, fueled by data extracted from researcher behavior. The essay begins by tracing the Google search engine’s roots in bibliometrics, alongside a history of the citation analysis company that became, in 2016, Clarivate. The point is to show the co-evolution of scholarly communication and the surveillance advertising economy. The essay then refines the idea of surveillance publishing by engaging with the work of Shoshana Zuboff, Jathan Sadowski, Mariano-Florentino Cuéllar, and Aziz Huq. The recent history of Elsevier is traced to describe the company’s research-lifecycle data-harvesting strategy, with the aim to develop and sell prediction products to universities and other customers. The essay concludes by considering some of the potential costs of surveillance publishing, as other big commercial publishers increasingly enter the predictive-analytics mark. It is likely, I argue, that windfall subscription-and-APC profits in Elsevier’s “legacy” publishing business have financed its decade-long acquisition binge in analytics, with the implication that university customers are budgetary victims twice over. The products’ purpose, I stress, is to streamline the top-down assessment and evaluation practices that have taken hold in recent decades, in tandem with the view that the university’s main purpose is to grow regional and national economies. A final pair of concerns is that publishers’ prediction projects may camouflage and perpetuate existing biases in the system—and that scholars may internalize an analytics mindset, one already encouraged by citation counts and impact factors.

Webinar – Openness and Privacy

“OASPA is pleased to announce our next webinar which will focus on the interface between openness and privacy. Open Access is part of a large movement in scholarly research toward openness, often captured in terms such as Open Science, Open Licenses, Open Data, and Open Metadata. The rights of researchers to make their work open are also being championed by funders, such as  Coalition S, using the Rights Retention Strategy. At the same time, in response to the ongoing intrusion of corporate and state interests into people’s private lives, the emphasis on (data) privacy has become more pronounced, for example with the advent of the EU’s General Data Protection Regulation.

In this OASPA webinar, we intend to discuss some aspects of this tension between openness and privacy: How to guarantee the privacy of researchers in the face of increasing research metrics gathering? How to deal with privacy questions with regard to large open data sets? How to balance legal privacy protections with cybersecurity concerns? How to balance openness with copyright and intellectual property rights? And what is the role of funders, publishers, universities and libraries in balancing the need for privacy with the demand for openness, and long-term preservation of that openness?…”

Beyond Copyright: the Ethics of Open Sharing | by Josie Fraser | Creative Commons: We Like to Share | Nov, 2021 | Medium

“In a world where internet and mobile technologies are mainstream, communities, groups and organisations routinely produce materials in a wide range of digital formats. This position paper looks at some of the ways in which the impacts of openly sharing these materials, or deciding not to, is an ethical decision. This paper also looks at some of the ways in which sharing openly can be considered in terms of an organisational commitment to social responsibility….

The decision to share openly (or not) is an ethical decision….”