DAFIDUMER: Medizinische Fakultät Heidelberg

New publication

About the project

The success and quality of medical research in the healthcare sector depends crucially on the ability to utilise personal data for research purposes, in particular personal health data, genome data and biomaterials collected in clinical contexts. So far, all efforts to find a legally secure, ethically acceptable and effective method for handling and providing the data have not yet led to a breakthrough. One promising concept that promises both practicability and protection of the rights of the data subjects is the concept of the data fiduciary.

The DFG-funded project "DAta FIDUciaries in MEdical Research" (DAFIDUMER), which is divided into a legal and an ethical part, aims to create the ethical and legal basis for the concept of data fiduciaries in medical research and to jointly submit concrete proposals for its implementation.

It is crucial to identify clear criteria that enable qualification as a data fiduciary. At present, a variety of concepts and models - with different functions - are summarised under the term data fiduciary.

Publications

Geibel SJ, Kiefer L, Maier AC, Winkler EC. Die Datentreuhand für die medizinische Forschung. MedR. 2026; 44: 507-515. doi.org/10.1007/s00350-026-7356-z
Kiefer L, Maier, A-C, Tavakoli S, Sulzbach N, Geibel SJ, Winkler EC. Applying Fiduciary Concepts to Health RDM - Mapping and Evaluation. 2^nd Conference on Research Data Infrastructure (CoRDI), Aachen, Germany, Zenodo, 2025. https://doi.org/10.5281/zenodo.16736366
Geibel SJ. Die Datentreuhand zu Forschungs- und anderen gemeinwohlnützigen Zwecken im Mehrebenensystem des Unionsrechts. In: Geibel SJ, Heinze C, Verse DA, eds. Binnenmarktrecht als Mehrebenensystem. Baden-Baden: Nomos Verlagsgesellschaft; 2023:233-281. https://doi.org/10.5771/9783748937814-233

Funded by the German Research Foundation (DFG)
Project number: 528528062
Project duration: 01.11.2023 - 31.12.2026

Publications

Geibel SJ, Kiefer L, Maier AC, Winkler EC. Die Datentreuhand für die medizinische Forschung. MedR. 2026; 44: 507-515. doi.org/10.1007/s00350-026-7356-z
Kiefer L, Maier, A-C, Tavakoli S, Sulzbach N, Geibel SJ, Winkler EC. Applying Fiduciary Concepts to Health RDM - Mapping and Evaluation. 2^nd Conference on Research Data Infrastructure (CoRDI), Aachen, Germany, Zenodo, 2025. https://doi.org/10.5281/zenodo.16736366
Geibel SJ. Die Datentreuhand zu Forschungs- und anderen gemeinwohlnützigen Zwecken im Mehrebenensystem des Unionsrechts. In: Geibel SJ, Heinze C, Verse DA, eds. Binnenmarktrecht als Mehrebenensystem. Baden-Baden: Nomos Verlagsgesellschaft; 2023:233-281. https://doi.org/10.5771/9783748937814-233

Talks

13.09.2024: Kiefer L, Winkler EC. “Translating ethical fiduciary concepts into health research: How can data fiduciaries contribute to a trust architecture for the research use of health data?”. EACME 2024 Annual Conference, 12.09.2024-14.09.2024, Martin-Luther-Universität Halle-Wittenberg, Halle/Saale, Deutschland.
27.08.2025: Kiefer L, Maier A-C, Tavakoli S, Sulzbach N, Geibel SJ, Winkler EC. „Applying Fiduciary Concepts to Health RDM. Mapping and Evaluation“. NFDI 2^nd Conference on Research Data Infrastructure (CoRDI) 2025, 26.08.2025-28.08.2025, RWTH Aachen University, Aachen, Deutschland.
12.09.2025: Kiefer L, Sulzbach N, Winkler EC. “Trust me, I’m a data fiduciary”. EACME 2025 Annual Conference, 11.09.2024-13.09.2024, Universität Zürich, Zürich, Schweiz.
06.10.2025: Geibel SJ. “The Legal Concept of Fiduciary Relationships with Experts”. Wissenschaftliches Symposium: „Why Trust Matters — And How it Fails. Trust In Technology, Institutions, Communities, and Professions.” 06.10.2025, Camilla-und-Georg-Jellinek-Zentrum für Ethik, Universität Heidelberg, Heidelberg, Deutschland.
26.11.2025: Kiefer L. „Treuhänder als Vertrauensinstanz: Datentreuhänder für die medizinische Forschung“. Research network „Trust in the context of healthcare technologies“, Universität Heidelberg, Heidelberg, Deutschland.

Supplementary publications

Ludewigs S, Narchi J, Kiefer L, Winkler EC. Ethics of the fiduciary relationship between patient and physician: the case of informed consent. Journal of Medical Ethics, 2025; 51:59-66. https://doi.org/10.1136/jme-2022-108539
Winkler EC. Das Konzept der Treuhand und sein Wert für die Medizinethik. Fellowbericht Marsilius-Kolleg Jahresbericht 2019/2020, 2021; 19:172-180. https://doi.org/10.11588/fmk.2021.0.78682
Geibel SJ, Ludewigs S, Narchi J, Winkler EC. Ärztliche Treuhänderschaft. Essay Marsilius-Kolleg Jahresbericht 2019/2020, 2021; 19:40-53. https://doi.org/10.11588/fmk.2021.0.78663