Lukas Kiefer¹, Eva Winkler¹

^{1 Institute} for Medical and Data Ethics, School of Medicine, Heidelberg University

Background: The concept of the fiduciary is gaining prominence in the discourse on medical ethics. Whilst the characterisation of the doctor–patient relationship as a fiduciary relationship – with doctors acting as trustees bound by the interests of their patients – has long been a subject of discussion, so-called data trustees have emerged in recent years. These are understood to be trustworthy bodies that manage health data and are intended to make it available for research in accordance with the data subjects’ specifications. Although corresponding models are already being implemented in practice, there has so far been a lack of fundamental feedback regarding the central elements of fiduciary relationships. This paper examines the role of the time horizon as a component of data stewardship that has received little attention to date.

Approach/Discussion: In a fiduciary relationship, a settlor transfers rights or legal authority to a trustee, whereby the trustee is granted extensive powers and discretion in their dealings with third parties. Internally, however – in relation to the settlor or the beneficiary – there is a strict obligation to act in the beneficiary’s best interests and in accordance with the agreed purpose of the relationship. The associated fiduciary duties – often referred to as the duties of loyalty and care – apply to the trustee for the entire duration of the relationship. Whilst these are limited to the duration of treatment in the doctor-patient relationship, the data trustee-data subject relationship involves a time horizon that is difficult to assess, as the storage and provision of data for research purposes is often intended to be permitted for decades (e.g. MII) or even indefinitely (e.g. GHGA). However, the fiduciary relationship must not be understood as a one-off act with regard to the data subject’s consent – instead, there must be ongoing consideration of the data subject’s interests throughout the entire period.

Conclusion: Data trustees for medical research can only fulfil their fiduciary duty if, firstly, there is an ongoing re-evaluation of the data subject’s interests; secondly, clear deadlines for the use of the data are established; and thirdly, there is transparency regarding the use and dissemination of the data.