Archives des mots-clés : data sharing

Balancing the local and the universal in maintaining ethical access to a genomics biobank

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Authors : Catherine Heeney, Shona M. Kerr

Background

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.

Methods

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.

Results

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.

Conclusions

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.

URL : Balancing the local and the universal in maintaining ethical access to a genomics biobank

DOI : https://doi.org/10.1186/s12910-017-0240-7

Research Transparency: A Preliminary Study of Disciplinary Conceptualisation, Drivers, Tools and Support Services

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Authors : Liz Lyon, Wei Jeng, Eleanor Mattern

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.

URL : Research Transparency: A Preliminary Study of Disciplinary Conceptualisation, Drivers, Tools and Support Services

DOI : https://doi.org/10.2218/ijdc.v12i1.530

Data Sharing and Cardiology : Platforms and Possibilities

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Authors : Pranammya Dey, Joseph S. Ross, Jessica D. Ritchie, Nihar R. Desai, Sanjeev P. Bhavnani, Harlan M. Krumholz

Sharing deidentified patient-level research data presents immense opportunities to all stakeholders involved in cardiology research and practice. Sharing data encourages the use of existing data for knowledge generation to improve practice, while also allowing for validation of disseminated research.

In this review, we discuss key initiatives and platforms that have helped to accelerate progress toward greater sharing of data. These efforts are being prompted by government, universities, philanthropic sponsors of research, major industry players, and collaborations among some of these entities.

As data sharing becomes a more common expectation, policy changes will be required to encourage and assist data generators with the process of sharing the data they create.

Patients also will need access to their own data and to be empowered to share those data with researchers. Although medicine still lags behind other fields in achieving data sharing’s full potential, cardiology research has the potential to lead the way.

URL : http://www.onlinejacc.org/content/70/24/3018

 

A review of data sharing statements in observational studies published in the BMJ: A cross-sectional study

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Authors : Laura McDonald, Anna Schultze, Alex Simpson, Sophie Graham, Radek Wasiak, Sreeram V. Ramagopalan

In order to understand the current state of data sharing in observational research studies, we reviewed data sharing statements of observational studies published in a general medical journal, the British Medical Journal.

We found that the majority (63%) of observational studies published between 2015 and 2017 included a statement that implied that data used in the study could not be shared. If the findings of our exploratory study are confirmed, room for improvement in the sharing of real-world or observational research data exists.

URL : A review of data sharing statements in observational studies published in the BMJ: A cross-sectional study

DOI : http://dx.doi.org/10.12688/f1000research.12673.2

Versioned data: why it is needed and how it can be achieved (easily and cheaply)

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Authors : Daniel S. Falster, Richard G. FitzJohn, Matthew W. Pennell, William K. Cornwell

The sharing and re-use of data has become a cornerstone of modern science. Multiple platforms now allow quick and easy data sharing. So far, however, data publishing models have not accommodated on-going scientific improvements in data: for many problems, datasets continue to grow with time — more records are added, errors fixed, and new data structures are created. In other words, datasets, like scientific knowledge, advance with time.

We therefore suggest that many datasets would be usefully published as a series of versions, with a simple naming system to allow users to perceive the type of change between versions. In this article, we argue for adopting the paradigm and processes for versioned data, analogous to software versioning.

We also introduce a system called Versioned Data Delivery and present tools for creating, archiving, and distributing versioned data easily, quickly, and cheaply. These new tools allow for individual research groups to shift from a static model of data curation to a dynamic and versioned model that more naturally matches the scientific process.

URL : Versioned data: why it is needed and how it can be achieved (easily and cheaply)

DOI : https://doi.org/10.7287/peerj.preprints.3401v1

 

Building a Disciplinary, World‐Wide Data Infrastructure

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Authors: Françoise Genova, Christophe Arviset, Bridget M. Almas, Laura Bartolo, Daan Broeder, Emily Law, Brian McMahon

Sharing scientific data with the objective of making it discoverable, accessible, reusable, and interoperable requires work and presents challenges being faced at the disciplinary level to define in particular how the data should be formatted and described.

This paper represents the Proceedings of a session held at SciDataCon 2016 (Denver, 12–13 September 2016). It explores the way a range of disciplines, namely materials science, crystallography, astronomy, earth sciences, humanities and linguistics, get organized at the international level to address those challenges. T

he disciplinary culture with respect to data sharing, science drivers, organization, lessons learnt and the elements of the data infrastructure which are or could be shared with others are briefly described. Commonalities and differences are assessed.

Common key elements for success are identified: data sharing should be science driven; defining the disciplinary part of the interdisciplinary standards is mandatory but challenging; sharing of applications should accompany data sharing. Incentives such as journal and funding agency requirements are also similar.

For all, social aspects are more challenging than technological ones. Governance is more diverse, often specific to the discipline organization. Being problem‐driven is also a key factor of success for building bridges to enable interdisciplinary research.

Several international data organizations such as CODATA, RDA and WDS can facilitate the establishment of disciplinary interoperability frameworks. As a spin‐off of the session, a RDA Disciplinary Interoperability Interest Group is proposed to bring together representatives across disciplines to better organize and drive the discussion for prioritizing, harmonizing and efficiently articulating disciplinary needs.

URL : Building a Disciplinary, World‐Wide Data Infrastructure

DOI : http://doi.org/10.5334/dsj-2017-016

 

How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF)

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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.

URL : How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF)

Alternative locaton : https://link.springer.com/article/10.1007/s12687-017-0332-6