Background: The main purpose of SSHOC is to create the social sciences and humanities area of the European Open Science Cloud (EOSC), thereby facilitating access to flexible, scalable research data and related services streamlined to the precise needs of the Social Science and Humanities (hereinafter SSH) community [1, 2]. The ambition of EOSC is to develop a ‘web of FAIR data and services’ for science in Europe, by building on existing research infrastructure and services supported by the EC, Member States and research communities. It brings these together in a federated ‘system of systems’ approach by aggregating content and enabling services to be used together [1, 2].
Main aim: This report examines possible ethical and legal issues with open access/sharing of social science and humanities research data and possible implications for the EOSC.
Scope of the report: The report identifies some ethical and juridical issues for open access/data sharing and addresses how these issues can have implications for the EOSC. The anticipated implications identified in this report relates to use and governance. The information presented has mostly been identified based on published reports and documents. A selection of experts in ethics and IPR has been asked to provide input on ethical issues and IPR issues for data sharing/open access. These parties were chosen as they had relevant experiences with data sharing and ethics and intellectual property rights (IPR).
Main outcome: Promoting data sharing among the scientific community is important and is a political goal. There are policy guidelines and incentives on sharing research data, both at international and national levels . It has become an essential practice, whether between different groups within the same organisation, between partners in larger platform endeavours, or even, as in growing open data movements, with the public. Data sharing contributes to the advancement of science in small increments, in addition to ensuring replicability and increased scientific rigour of individual studies. Data sharing enables new insights from existing data, and lets organisations make full use of this core resource. However, it also introduces ethical and legal issues.
Conclusion: As part of identifying ethical issues, the report identifies a risk of research subjects losing control over their personal data, a risk that scientific data might be used for commercial interests, that sharing data sources potentially can be coupled to persons can increase the risk of harm for the research subjects. In addition, the report identifies issues with informed consent, and the challenges of ensuring that each research subject fully understands what participation in a project entails, and what storage and access via an open cloud platform entails. As part of identifying legal issues, the report finds that the content of contracts between a researcher and research subjects in study can have implications for the aggregated ‘system of systems’ approach of the EOSC, as it can affect how data can be shared in a federated and common EOSC catalogue. Furthermore, the report finds that this environment may have implications for the handling of intellectual property rights (IPR). These issues can be considered differently depending on the context of scientific research and the influence of private actors/commercial
undertakings and must be resolved before data are shared and managed in each project. Results from this report indicate that further work on how to resolve/handle ethical and legal issues related to open access and sharing of research data should be actioned. It will be helpful to envision a mechanism able to verify that legal and ethical issues are considered and resolved, before making data available through a federated EOSC catalogue.
Highlighted recommendations in the report:
The EOSC should provide overarching, transnational ethical guidelines for data sharing and open
access, and services connected to the EOSC should ask researchers or research institutions who wish to share data to comply with such guidelines. Other reports have also recommended that the EOSC provide templates for data sharing agreements, national support services and best practice bench marking.
The EOSC should evaluate whether it is a service open and available to all, including purely commercial agents or entities, or if it should be a service that prioritises researchers and academic institutions. Efforts should be made to ensure, through clear guidelines and/or requirements that services connected to the EOSC have provided the data owners and depositors an opportunity to opt out of giving commercial entities future access to data that is indexed by and can be found through the EOSC.
As a federated system, the conditions, and safeguards of the EOSC should have clear and explicit requirements that cover the protection of vulnerable groups, and such requirements should be set for the services that wish to join the EOSC.
Regarding existing datasets, the EOSC should take steps to safeguard datasets have been evaluated as being scientifically and ethically sound before they are shared. The services connected to the EOSC might put in place requirements for the ethical considerations that should be made by researchers, and demand confirmation that these requirements have in fact been met before data can be shared.
A plan should be made on how to ensure IPR licensing arrangements are in place, when sharing data through the EOSC.
The EOSC should also have a plan on how to verify which data can be indexed, discovered, and shared through the cloud, to act in accordance with agreements made with participants.