Social science and humanities research infrastructures allow the sharing and safe use of confidential data for research. In recent years there has been a shift towards virtual data enclaves or Remote Access or Remote Desktop systems that offer fewer physical controls. They need to be replaced with other safeguards, including often mandatory training. This training aims to ensure that researchers are equipped with the knowledge required to use secure/legally controlled data safely.
The deliverable documents a data access plan for enhancing the availability of biomarker data from dried blood spot samples collected by SHARE. The procedure will be of interest to researchers, survey methodologists, and data archives providing biomedical data collected in survey settings.
This deliverable is a result of Task 5.1 of the Social Sciences and Humanities Open Cloud (SSHOC) project, focusing on the legal, ethical, and technological issues of access to biomedical data. The task deals with the challenge of adapting the FAIR principles to the access of biomedical data available for the research community. As an intermediate step to the actual data access, this deliverable provides the data access plan for making accelerometer data available.
Collecting biomedical data in a social science survey is an enormous challenge due to ethical and legal issues that need to be considered. The ultimate goal is the release of the data to enable the research community to fully exploit the potential of these data. SSHOC Task 5.1 is dedicated to the release of biomedical data collected in SHARE wave 6 (DBSS) and wave 8 (accelerometer data). In the accelerometer study conducted in SHARE wave 8, a sub-sample of respondents were asked to wear an accelerometer – i.e. a sensor that captures acceleration – on their thigh for eight days.
Within task 5.2 (Hosting and sharing data repositories) of the SSHOC project, repository software is being developed based on Dataverse, for the sharing and publication of research data within the Social Science and Humanities (SSH) domain. Dataverse is open-source research data repository software developed by the Institute for Quantitative Social Science (IQSS), Harvard University. This document describes the work done by task 5.2, for the development of ‘Archive in a Box’ repository software and proof of concept of centralised installation in the cloud.
In the context of the Social Sciences and Humanities Open Cloud - SSHOC project realising the Social Sciences and Humanities (SSH) part of the European Open Science Cloud (EOSC), Task 5.2 Hosting and sharing data repositories (T5.2) has worked towards adjusting and enhancing the Dataverse repository software to the needs of the SSH research communities. Dataverse is an open-source, community-driven data repository software that has been tailored to serve the SSH communities.
Background: The General Data Protection Regulation (EU) 2016/679 (hereinafter referred to as GDPR or the Regulation) 1 has given European countries a unique opportunity to harmonize their legal framework, and to improve the conditions for research and cross-border data flow. Although one of the rationales behind the GDPR was to harmonize the legal framework for data processing to improve conditions for research and cross-border data flow. This represents both risks and opportunities.
The General Data Protection Regulation (EU) 2016/679 (hereinafter GDPR or this Regulation) has given European countries a unique opportunity to harmonise their legal framework, and to improve the conditions for research and cross-border data flow. Although one of the rationales behind the GDPR was to harmonise the legal framework for data processing to improve conditions for research and crossborder data flow, this has not necessarily been the case.