The report on the Value of Open Data Sharing was first prepared for the GEO-XII Plenary by the GEO Participating Organization CODATA (the ICSU Committee on Data for Science and Technology). Through showcasing diverse benefits of open Earth observations data, the report is designed to facilitate the process of transitioning from restricted data policies to more open policies for government data. At the GEO-XII Plenary the report received positive feedback from GEO Member countries and Participating Organizations, who also expressed willingness to contribute supplementary case studies. Therefore, it was decided to maintain this report as a living document, with this version for the record as version 1. The GEO community will provide periodic updates, examples and case studies.
Abstract Independent data stewardship remains a core component of good data governance practice. Yet, there is a need for more robust independent data stewardship models that are able to oversee data-driven, multi-party data sharing, usage and re-usage, which can better incorporate citizen representation, especially in relation to personal data. We propose that data foundations—inspired by Channel Islands' foundations laws—provide a workable model for good data governance not only in the Channel Islands, but also elsewhere. A key advantage of this model—in addition to leveraging existing legislation and building on established precedent—is the statutory role of the guardian that is a unique requirement in the Channel Islands, and when interpreted in a data governance model provides the independent data steward. The principal purpose for this paper, therefore, is to demonstrate why data foundations are well suited to the needs of data sharing initiatives. We further examine how data foundations could be established in practice—and provide key design principles that should be used to guide the design and development of any data foundation.
Independent data stewardship remains a core component of good data governance practice. Yet, there is a need for more robust independent data stewardship models that are able to oversee data-driven, multi-party data sharing, usage and re-usage, which can better incorporate citizen representation, especially in relation to personal data. We propose that data foundations – inspired by Channel Islands' foundations laws – provide a workable model for good data governance not only in the Channel Islands but also elsewhere. A key advantage of this model – in addition to leveraging existing legislation and building on established precedent – is the statutory role of the guardian that is a unique requirement in the Channel Islands, and when interpreted in a data governance model provides the independent data steward. The principal purpose for this paper therefore is to demonstrate why data foundations are well suited to the needs of data sharing initiatives. We further examine how data foundations could be established in practice – and provide key design principles that should be used to guide the design and development of any data foundation.
Dementia currently affects almost 8 million people in Europe and is a leading cause of disability and dependency in old age. With the share of people aged 65 and over projected to rise to 29% of the European population by 2070, dementia is an increasingly critical public health issue. As such, research into the causes, diagnosis, prevention and care of dementia is of enormous importance – particularly as there are no disease-modifying treatments currently available. In December 2013, at the G8 Dementia Summit, ministers agreed to share information and data from dementia research studies, to get the best return on investment in research. While numerous initiatives have been launched to make this promise a reality, data from many dementia research studies still remains siloed, stored behind the firewalls of research institutions, drug companies and medical centers. Since 2013, the European policy landscape has evolved substantially; the Horizon 2020 Framework Programme for Research and Innovation, initiated in 2014, is drawing to a close, and digital technologies and personalised medicine are now firmly on the EU agenda. The legal landscape has also been reshaped; for clinical research data to travel between institutions and across borders, researchers must now show compliance with the General Data Protection Regulation (GDPR). In this report, we outline the policy and legal landscapes that dementia researchers have had to navigate since the launch of Horizon 2020, identifying the key barriers and enablers for data sharing. We have also mapped the portfolio of projects on dementia funded by Horizon 2020, assessing the scale of EU investment in dementia research and the proportion of projects that involve the use of clinical research data. Finally, we reviewed recent surveys of researchers, research participants and patients, evaluating their perceptions, motivations and concerns regarding data sharing.
The IDRC-funded project 'Empowering Indigenous Peoples and Knowledge Systems Related to Climate Change and Intellectual Property Rights' is part of the Open and Collaborative Science in Development Network (OCSDNet). The project "examiners processes of open and collaborative science related to indigenous peoples' knowledge, climate change and intellectual property rights". Natural Justice, the lead organisation has a strong ethical stance on the agency and control over knowledge being vested with the contributing project participants, communities of the Nama and Griqua peoples of the Western Cape of South Africa. The project focuses on questions of how climate change is affecting these communities, how do they produce and maintain knowledge relating to climate change, how that knowledge is characterised and shared (or not) with wider publics, and how legal frameworks promote or hinder the agenda of these indigenous communities and their choices to communicate and collaborate with wider publics. Indigenous Knowledge is an area where ethical issues of informed consent, historical injustice, non-compatible epistemologies and political, legal, and economic issues all collide in ways that challenge western and Anglo-American assumptions about data sharing. The group seeks to strongly model and internally critique their own ethical stance in the process of their research, through for instance, using community contracts and questioning institutional informed consent systems.
The IDRC-funded project 'Empowering Indigenous Peoples and Knowledge Systems Related to Climate Change and Intellectual Property Rights' is part of the Open and Collaborative Science in Development Network (OCSDNet). The project "examiners processes of open and collaborative science related to indigenous peoples' knowledge, climate change and intellectual property rights". Natural Justice, the lead organisation has a strong ethical stance on the agency and control over knowledge being vested with the contributing project participants, communities of the Nama and Griqua peoples of the Western Cape of South Africa. The project focuses on questions of how climate change is affecting these communities, how do they produce and maintain knowledge relating to climate change, how that knowledge is characterised and shared (or not) with wider publics, and how legal frameworks promote or hinder the agenda of these indigenous communities and their choices to communicate and collaborate with wider publics. Indigenous Knowledge is an area where ethical issues of informed consent, historical injustice, non-compatible epistemologies and political, legal, and economic issues all collide in ways that challenge western and Anglo-American assumptions about data sharing. The group seeks to strongly model and internally critique their own ethical stance in the process of their research, through for instance, using community contracts and questioning institutional informed consent systems.
The current emphasis on broad sharing of human genomic data generated in research in order to maximize utility and public benefit is a significant legacy of the Human Genome Project. Concerns about privacy and discrimination have led to policy responses that restrict access to genomic data as the means for protecting research participants. Our research and experience show, however, that a considerable number of research participants agree to open access sharing of their genomic data when given the choice. General policies that limit access to all genomic data fail to respect the autonomy of these participants and, at the same time, unnecessarily limit the utility of the data. We advocate instead a more balanced approach that allows for individual choice and encourages informed decision making, while protecting against the misuse of genomic data through enhanced legislation.
Abstract This paper examines the relationship between p-hacking, publication bias and data-sharing policies. We collect 38,876 test statistics from 1,106 articles published in leading economic journals between 2002–20. We find that, while data-sharing policies increase the provision of data, they do not decrease the extent of p-hacking and publication bias. Similarly, articles that use hard-to-access administrative data or third-party surveys, as compared to those that use easier-to-access (e.g., author-collected) data, are not different in their p-hacking and publication extent. Voluntary provision of data by authors on their home pages offers no evidence of reduced p-hacking.
