The goal of this paper is to assess the journal publication process from value and ethical perspectives.
The specific objectives are: (1) To define fundamental values relevant to scientific journal publication; (2) To identify stakeholders involved in professional journals and their value rights and responsibilities; (3) To discuss the steps of the journal publication process where ethical dilemmas arise and the potential influences of such dilemmas on the advancement of knowledge; and (4) To summarize actions that can minimize unethical practices throughout the steps of the publication process.
Values such as honesty, efficiency, accountability, and fairness will be discussed. Issues related to the various stakeholders such as self-citation, plagiarism, dual publication, a lack of timeliness, and issues related to authorship will be a primary focus.
Issues of balancing data accessibility with ethical considerations and governance of a genomics research biobank, Generation Scotland, are explored within the evolving policy landscape of the past ten years. During this time data sharing and open data access have become increasingly important topics in biomedical research.
Decisions around data access are influenced by local arrangements for governance and practices such as linkage to health records, and the global through policies for biobanking and the sharing of data with large-scale biomedical research data resources and consortia.
We use a literature review of policy relevant documents which apply to the conduct of biobanks in two areas: support for open access and the protection of data subjects and researchers managing a bioresource.
We present examples of decision making within a biobank based upon observations of the Generation Scotland Access Committee. We reflect upon how the drive towards open access raises ethical dilemmas for established biorepositories containing data and samples from human subjects.
Despite much discussion in science policy literature about standardisation, the contextual aspects of biobanking are often overlooked. Using our engagement with GS we demonstrate the importance of local arrangements in the creation of a responsive ethical approach to biorepository governance.
We argue that governance decisions regarding access to the biobank are intertwined with considerations about maintenance and viability at the local level. We show that in addition to the focus upon ever more universal and standardised practices, the local expertise gained in the management of such repositories must be supported.
A commitment to open access in genomics research has found almost universal backing in science and health policy circles, but repositories of data and samples from human subjects may have to operate under managed access, to protect privacy, align with participant consent and ensure that the resource can be managed in a sustainable way.
Data access committees need to be reflexive and flexible, to cope with changing technology and opportunities and threats from the wider data sharing environment. To understand these interactions also involves nurturing what is particular about the biobank in its local context.
This paper describes a preliminary study of research transparency, which draws on the findings from four focus group sessions with faculty in chemistry, law, urban and social studies, and civil and environmental engineering.
The multi-faceted nature of transparency is highlighted by the broad ways in which the faculty conceptualised the concept (data sharing, ethics, replicability) and the vocabulary they used with common core terms identified (data, methods, full disclosure).
The associated concepts of reproducibility and trust are noted. The research lifecycle stages are used as a foundation to identify the action verbs and software tools associated with transparency.
A range of transparency drivers and motivations are listed. The role of libraries and data scientists is discussed in the context of the provision of transparency services for researchers.
Authors : Heidi Carmen Howard, Deborah Mascalzoni, Laurence Mabile, Gry Houeland, Emmanuelle Rial-Sebbag, Anne Cambon-Thomsen
Currently, a great deal of biomedical research in fields such as epidemiology, clinical trials and genetics is reliant on vast amounts of biological and phenotypic information collected and assembled in biobanks.
While many resources are being invested to ensure that comprehensive and well-organised biobanks are able to provide increased access to, and sharing of biomedical samples and information, many barriers and challenges remain to such responsible and extensive sharing.
Germane to the discussion herein is the barrier to collecting and sharing bioresources related to the lack of proper recognition of researchers and clinicians who developed the bioresource. Indeed, the efforts and resources invested to set up and sustain a bioresource can be enormous and such work should be easily traced and properly recognised.
However, there is currently no such system that systematically and accurately traces and attributes recognition to those doing this work or the bioresource institution itself. As a beginning of a solution to the “recognition problem”, the Bioresource Research Impact Factor/Framework (BRIF) initiative was proposed almost a decade and a half ago and is currently under further development.
With the ultimate aim of increasing awareness and understanding of the BRIF, in this article, we contribute the following: (1) a review of the objectives and functions of the BRIF including the description of two tools that will help in the deployment of the BRIF, the CoBRA (Citation of BioResources in journal Articles) guideline, and the Open Journal of Bioresources (OJB); (2) the results of a small empirical study on stakeholder awareness of the BRIF and (3) a brief analysis of the ethical dimensions of the BRIF which allow it to be a positive contribution to responsible biobanking.
Although there are a number of online platforms for patient-level clinical trial data sharing from industry sponsors, they are not very harmonized regarding the role of local ethics approval in the research proposal review process.
The first and largest of these platforms is ClinicalStudyDataRequest.com (CSDR), which includes over three thousand trials from thirteen sponsors including GlaxoSmithKline, Novartis, Roche, Sanofi, and Bayer. CSDR asks applicants to state whether they have received ethics approval for their research proposal, but in most cases does not require that they submit evidence of approval.
However, the website does require that applicants without ethical approval state the reason it was not required. In order to examine the perspectives of researchers on this topic, we coded every response to that question received by CSDR between June 2014 and February 2017.
Of 111 applicants who stated they were exempt from ethics approval, 63% mentioned de-identification, 57% mentioned the use of existing data, 33% referred to local or jurisdictional regulations, and 20% referred to the approvals obtained by the original study.
We conclude by examining the experience of CSDR within the broader context of the access mechanisms and policies currently being used by other data sharing platforms, and discuss how our findings might be used to help clinical trial data providers design clear and informative access documents.
While data sharing is becoming increasingly common in quantitative social inquiry, qualitative data are rarely shared. One factor inhibiting data sharing is a concern about human participant protections and privacy.
Protecting the confidentiality and safety of research participants is a concern for both quantitative and qualitative researchers, but it raises specific concerns within the epistemic context of qualitative research.
Thus, the applicability of emerging protection models from the quantitative realm must be carefully evaluated for application to the qualitative realm. At the same time, qualitative scholars already employ a variety of strategies for human-participant protection implicitly or informally during the research process.
In this practice paper, we assess available strategies for protecting human participants and how they can be deployed. We describe a spectrum of possible data management options, such as de-identification and applying access controls, including some already employed by the Qualitative Data Repository (QDR) in tandem with its pilot depositors.
Throughout the discussion, we consider the tension between modifying data or restricting access to them, and retaining their analytic value.
We argue that developing explicit guidelines for sharing qualitative data generated through interaction with humans will allow scholars to address privacy concerns and increase the secondary use of their data.
In this paper, the authors address learning analytics and the ways academic libraries are beginning to participate in wider institutional learning analytics initiatives. Since there are moral issues associated with learning analytics, the authors consider how data mining practices run counter to ethical principles in the American Library Association’s “Code of Ethics.”
Specifically, the authors address how learning analytics implicates professional commitments to promote intellectual freedom; protect patron privacy and confidentiality; and balance intellectual property interests between library users, their institution, and content creators and vendors.
The authors recommend that librarians should embed their ethical positions in technological designs, practices, and governance mechanisms.