EN

Trust, Respect, and Reciprocity : Informing Culturally Appropriate Data-Sharing Practice in Vietnam

Posted on by Hans Dillaerts

International science funders and publishers are driving a growing trend in data sharing. There is mounting pressure on researchers in low- and middle-income settings to conform to new sharing policies, despite minimal empirically grounded accounts of the ethical challenges of implementing the policies in these settings.

This study used in-depth interviews and focus group discussions with 48 stakeholders in Vietnam to explore the experiences, attitudes, and expectations that inform ethical and effective approaches to sharing clinical research data. Distinct views on the role of trust, respect, and reciprocity were among those that emerged to inform culturally appropriate best practices. We conclude by discussing the challenges that authors of data-sharing policies should consider in this unique context.

URL : Trust, Respect, and Reciprocity

Alternative location : http://m.jre.sagepub.com/content/10/3/251

EN

Sweat, Skepticism, and Uncharted Territory : A Qualitative Study of Opinions on Data Sharing Among Public Health Researchers and Research Participants in Mumbai, India

Posted on by Hans Dillaerts

Efforts to internalize data sharing in research practice have been driven largely by developing international norms that have not incorporated opinions from researchers in low- and middle-income countries. We sought to identify the issues around ethical data sharing in the context of research involving women and children in urban India. We interviewed researchers, managers, and research participants associated with a Mumbai non-governmental organization, as well as researchers from other organizations and members of ethics committees.

We conducted 22 individual semi-structured interviews and involved 44 research participants in focus group discussions. We used framework analysis to examine ideas about data and data sharing in general; its potential benefits or harms, barriers, obligations, and governance; and the requirements for consent. Both researchers and participants were generally in favor of data sharing, although limited experience amplified their reservations. We identified three themes: concerns that the work of data producers may not receive appropriate acknowledgment, skepticism about the process of sharing, and the fact that the terrain of data sharing was essentially uncharted and confusing.

To increase data sharing in India, we need to provide guidelines, protocols, and examples of good practice in terms of consent, data preparation, screening of applications, and what individuals and organizations can expect in terms of validation, acknowledgment, and authorship.

URL : Sweat, Skepticism, and Uncharted Territory

Alternative location : http://m.jre.sagepub.com/content/10/3/239

EN

Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research : A Systematic Scoping Review

Posted on by Hans Dillaerts

There is increasing support for sharing individual-level data generated by medical and public health research. This scoping review of empirical research and conceptual literature examined stakeholders’ perspectives of ethical best practices in data sharing, particularly in low- and middle-income settings. Sixty-nine empirical and conceptual articles were reviewed, of which, only five were empirical studies and eight were conceptual articles focusing on low- and middle-income settings.

We conclude that support for sharing individual-level data is contingent on the development and implementation of international and local policies and processes to support ethical best practices. Further conceptual and empirical research is needed to ensure data sharing policies and processes in low- and middle-income settings are appropriately informed by stakeholders’ perspectives.

URL : Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research

Alternative location : http://m.jre.sagepub.com/content/10/3/225

EN

Sharing Public Health Research Data: Toward the Development of Ethical Data-Sharing Practice in Low- and Middle-Income Settings

Posted on by Hans Dillaerts

It is increasingly recognized that effective and appropriate data sharing requires the development of models of good datasharing practice capable of taking seriously both the potential benefits to be gained and the importance of ensuring that the rights and interests of participants are respected and that risk of harms is minimized. Calls for the greater sharing of individual-level data from biomedical and public health research are receiving support among researchers and research funders. Despite its potential importance, data sharing presents important ethical, social, and institutional challenges in low-income settings.

In this article, we report on qualitative research conducted in five low- and middle-income countries exploring the experiences of key research stakeholders and their views about what constitutes good data-sharing practice.

URL : Sharing Public Health Research Data

Alternative location : http://m.jre.sagepub.com/content/10/3/217

EN

Legal Aspects of Open Access to Publicly Funded Research

Posted on by Hans Dillaerts

Internet growth, content digitisation, and expanding “big data” and data analytics capabilities have affected the ways in which publicly funded research results are accessed, disseminated and used. While these technological advances have made sharing and processing information easier, that does not change the fact that the information may be protected by IP laws.

Open access efforts, which aim to make the outputs of publicly funded research more widely accessible in digital formats, therefore raise a number of IP policy questions. To explain the interplay between open access and IP laws, this chapter provides an overview of the IP regimes that protect research outputs in a sample of OECD jurisdictions. It then reviews the open access policies that are in place in some of those jurisdictions and examines two contexts in which IP questions can arise when open access principles are applied: public/private partnerships and text and data mining.

URL : Legal Aspects of Open Access to Publicly Funded Research

Non classé

Open Science in Poland 2014 : A Diagnosis

Posted on by Hans Dillaerts

The process of producing and distributing scientific knowledge has been undergoing significant changes recently, termed collectively as “opening” of science. The changes were begun with the development of new technologies, but their dynamics was also influenced by the features of scholary communication and the social role of scientific research, as well as its institutional and political context. The basic aspect of Open Science is Open Access to scientific literature and data, but openness can also concern other elements of science, such
as conducting, evaluating, disseminating and using research and its findings.

The open models were initially implemented locally, as a “grassroot” movement, but with time a need arose for a more systematic approach, especially in strategies and policies of institutions responsible for research and funding, both state-owned and international bodies. In Poland such strategies and policies are yet to be developed, and the basic condition to be fulfilled is establishing a diagnosis of the current state of openness in the Polish science sector. The present report is an attempt to draw such a diagnosis.

URL : https://microblogging.infodocs.eu/wp-content/uploads/2015/08/Szprot2015.pdf

Alternative location : http://pon.edu.pl/index.php/nasze-publikacje?pubid=16

EN

Too much of a good thing? An observational study of prolific authors

Posted on by Hans Dillaerts

Introduction

Researchers’ productivity is usually measured in terms of their publication output. A minimum number of publications is required for some medical qualifications and professional appointments. However, authoring an unfeasibly large number of publications might indicate disregard of authorship criteria or even fraud. We therefore examined publication patterns of highly prolific authors in 4 medical specialties.

Methods

We analysed Medline publications from 2008–12 using bespoke software to disambiguate individual authors focusing on 4 discrete topics (to further reduce the risk of combining publications from authors with the same name and affiliation). This enabled us to assess the number and type of publications per author per year.

Results

While 99% of authors were listed on fewer than 20 publications in the 5-year period, 24 authors in the chosen areas were listed on at least 25 publications in a single year (i.e., >1 publication per 10 working days). Types of publication by the prolific authors varied but included substantial numbers of original research papers (not simply editorials or letters).

Conclusions

Institutions and funders should be alert to unfeasibly prolific authors when measuring and creating incentives for researcher productivity.

URL : Too much of a good thing? An observational study of prolific authors

DOI : https://dx.doi.org/10.7717/peerj.1154