Carrots and Sticks? Data Sharing Policies for (German) Public Research Funders. Ethical, Legal, Social, and Behavioural Aspects
Project Speaker: Dr. phil. Christoph Schickhardt
(German version below)
Data sharing is key to realize the promises of big data driven biomedical research. Data sharing warrants data availability and reproducibility of research results, efficiency, quality, as well as statistical significance and pace. It allows for new research uses of existing data and encourages new research collaborations. However, even though the importance of data sharing is widely recognized by researchers, data sharing is still not common practice.
The joint research project DATABLIC is focused on the question of how public funders could and should design their funding policies and grant conditions in order to get funded scientists to share their data in a systematic and reliable way with the scientific community. How is it possible to ascertain that “raw”-data and sufficient information about tools of analysis and methods be made accessible and usable? And how can policies respect the (legitimate) interests of different stakeholder? The aim of the project is to develop practical policy recommendations for public funders (in Germany).
The joint research project DATABLIC is funded by the German Federal Ministry of Education and Research (BMBF) via th program „Forschung zu ethischen, rechtlichen und sozialen Aspekten (ELSA) der Digitalisierung, von Big Data und Künstlicher Intelligenz in der Gesundheitsforschung und -versorgung“ (Research on Ethical, Legal and Social Aspects of Digitization, Big Data and Artificial Intelligence in Health Research).
The project brings together four disciplines – ethics, social sciences, law, and behavioural economics – that are dedicated to four sub-projects.
Sub-project 1 (ethics) evaluates moral claims and interests of stakeholders as well as particular goods that are associated with data sharing. The overall aim of the sub-project is the application of ethical criteria to concrete policy elements. Research questions are:
1. How do current data sharing policies of national and international agencies look like?
2. What is the relevance of stakeholders’ interests and / or moral rights? What responsibilities do stakeholders, most importantly funders and data generating researchers, have with respect to data sharing? Can pressure and mandatory elements in funders’ policies be justified?
3. What are specific challenges to effectively respect and protect data donors’ rights and concerns and how can these challenges be met by governance measures? Are there relevant differences between patients and research subjects?
4. How do possible approaches and elements of data sharing policies relate to ethical criteria?
Sub-project 2 (social sciences) addresses the following set of questions from a socio-empirical perspective:
1. What are experiences and views of international funders such as the NIH concerning their innovative approaches (combining support, embargos and mandatory elements) towards data sharing: What is the impact of innovative policy approaches on data sharing? What are experiences and views of international principal investigators of funded projects? How do they perceive and experience data sharing under innovative, clear and strong data sharing policies and grant conditions?
2. What are the experiences, attitudes and concerns of German funders with respect to data sharing practice and innovative approaches of data sharing policies? What are the attitudes and concerns of researchers in Germany with respect to data sharing and current and potentially innovative data sharing policies by German funders?
3. What is the current state of availability of research data from recently concluded publicly funded biomedical research projects in Germany?
The aim of this sub-project is to empirically inform the ethical and legal analyses and the development of recommendations for research funders.
German Cancer Research Center (DKFZ) / National Center for Tumor Diseases (NCT), Heidelberg
Lead: Dr. phil. Christoph Schickhardt | email@example.com
Phone: (+49) 06221 56 36 756
Funds: 423.346 EUR
Dr. phil. Michael Anger (sociology) | firstname.lastname@example.org | (+49) 06221 548648
Dr. phil. Christian Wendelborn (philosophy / ethics) | email@example.com | (+49) 06221 548648
The project addresses legal frameworks and conditions for Data Sharing. Research questions are the following:
1. What are the legally relevant regulations for the exchange of research data in the countries to be compared, in the EU and from governmental research funding agencies?
2. Can sharing data with the research community be required as a funding condition by governmental funding agencies? To what extent can academic freedom of research be restricted in favor of conflicting (constitutionally protected) legal interests and intellectual property law in a comparative legal analysis?
3. How can the personal rights of the data donors be adequately taken into account? What data protection and copyright limits must be observed? Who is liable for the security of personal data?
The analysis of the legal framework provides a pivotal background for the formulation of policy recommendations.
Bucerius Law School, Hochschule für Rechtswissenschaft gemeinnützige GmbH
Lead: Prof. Dr. Michael Fehling | firstname.lastname@example.org
Phone: (+49) 040 30 70 6 230
Funds: 165.107 EUR
Miriam Tormin, Mag. iur. (law) | email@example.com | (+49) 040 30 70 6 232
The project investigates data sharing from the perspective of behavioural economics. Research questions are:
1. Is data sharing a public good and what exactly grounds its nature as a public good?
2. How do the relevant actors perceive existing norms and what factors influence de facto their behaviour?
3. What are efficient and effective ways to write and apply data sharing policies?
Ruprecht-Karls-Universität Heidelberg, Fakultät für Wirtschafts- und Sozialwissenschaften, Alfred-Weber-Institut für Wirtschaftswissenschaften, Lehrstuhl für Verhaltensökonomik
Lead: Prof. Dr. Christiane Schwieren | firstname.lastname@example.org
Phone: (+49) 06221 54 2953
Funds: 206.810 EUR
Tamás Oláh, M.Sc. (behavioural economics) | email@example.com | (+49) 06221 54 2950