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….”

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….”


Modernizing JCRS Online Case Reports: open access, signed pa… : Journal of Cataract & Refractive Surgery

“To better serve our readers and authors, we [JCRS Online Case Reports] will be moving to an Open Access publishing model, under a Creative Commons license to publish. The first step of this transition is to require signed consent from all patients included in case reports. Minor changes in the format of the abstract are also required.”

Integrating Qualitative Methods and Open Science: Five Principles for More Trustworthy Research* | Journal of Communication | Oxford Academic

Abstract:  Recent initiatives toward open science in communication have prompted vigorous debate. In this article, we draw on qualitative and interpretive research methods to expand the key priorities that the open science framework addresses, namely producing trustworthy and quality research. This article contributes to communication research by integrating qualitative methodological literature with open communication science research to identify five broader commitments for all communication research: validity, transparency, ethics, reflexivity, and collaboration. We identify key opportunities where qualitative and quantitative communication scholars can leverage the momentum of open science to critically reflect on and improve our knowledge production processes. We also examine competing values that incentivize dubious practices in communication research, and discuss several metascience initiatives to enhance diversity, equity, and inclusion in our field and value multiple ways of knowing.


The ethics of data sharing and biobanking in health research

Abstract:  The importance of data sharing and biobanking are increasingly being recognised in global health research. Such practices are perceived to have the potential to promote science by maximising the utility of data and samples. However, they also raise ethical challenges which can be exacerbated by existing disparities in power, infrastructure and capacity. The Global Forum on Bioethics in Research (GFBR) convened in Stellenbosch, South Africa in November 2018, to explore the ethics of data sharing and biobanking in health research. Ninety-five participants from 35 countries drew on case studies and their experiences with sharing in their discussion of issues relating to respecting research participants and communities, promoting equitable sharing, and international and national approaches to governing data sharing and biobanking. In this editorial we will briefly review insights relating to each of these three themes.


The Personal Genome Project-UK, an open access resource of human multi-omics data | Scientific Data

“Integrative analysis of multi-omics data is a powerful approach for gaining functional insights into biological and medical processes. Conducting these multifaceted analyses on human samples is often complicated by the fact that the raw sequencing output is rarely available under open access. The Personal Genome Project UK (PGP-UK) is one of few resources that recruits its participants under open consent and makes the resulting multi-omics data freely and openly available. As part of this resource, we describe the PGP-UK multi-omics reference panel consisting of ten genomic, methylomic and transcriptomic data. Specifically, we outline the data processing, quality control and validation procedures which were implemented to ensure data integrity and exclude sample mix-ups. In addition, we provide a REST API to facilitate the download of the entire PGP-UK dataset. The data are also available from two cloud-based environments, providing platforms for free integrated analysis. In conclusion, the genotype-validated PGP-UK multi-omics human reference panel described here provides a valuable new open access resource for integrated analyses in support of personal and medical genomics….”