Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany

Gesine Richter*, Christoph Borzikowsky, Wiebke Lesch, Sebastian C. Semler, Eline M. Bunnik, Alena Buyx, Michael Krawczak

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

23 Citations (Scopus)
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Making routine clinical-care-data available for medical research requires adequate consent to legitimize use and exchange. While, public interest in supporting medical research is increasing, individuals often find it difficult to actively enable researchers to access their data. In addition to broad consent, the idea of (consent-free) data donation has been brought into play as another way to legitimize secondary research use of medial data. However, flanking the implementation of broad consent policies or data donation, the attitude of patients, and the general public toward different aspects of these approaches needs to be assessed. We conducted two empirical studies to this end among Dutch patients (n = 7430) and representative German citizens (n = 1006). Wide acceptance of broad consent was observed among Dutch patients (92.3%), corroborating previous findings among German patients (93.0%). Moreover, 28.8% of the Dutch patients generally approved secondary data-use for non-academic research, 42.3% would make their decision dependent upon the type of institution in question. In the German survey addressing the general population, 78.8% approved data donation without explicit consent as an alternative model of legitimization, the majority of those who approved (96.7%) would allow donated data to be used by universities and public research institutions. This willingness to support contrasted sharply with the fact that only 16.6% would allow access to the data by industry. Our findings thus not only add empirical evidence to the debate about broad consent and data donation, but also suggest that widespread public discussion and education about the role of industry in medical research is necessary in that context.

Original languageEnglish
Pages (from-to)495-502
Number of pages8
JournalEuropean Journal of Human Genetics
Issue number3
Early online date1 Oct 2020
Publication statusPublished - Mar 2021

Bibliographical note

Funding Information:
Funding TMF e.V. is funded by the German Federal Ministry of Education and Research (funding reference number 01ZZ1805).

Funding Information:
Increasingly, data from routine clinical care are made available systematically and comprehensively for medical research. Various funding schemes have been implemented to this end in many countries, including the Medical Informatics Initiative (MII) instigated by the German Federal Ministry of Education and Research [1, 2] and recent research data programs funded by the Dutch Association of University Hospitals [3] and the Dutch Ministry of Health, Welfare and Sports [4, 5]. In addition, biospecimens collected in the course of clinical care in The Netherlands are made available to researchers through a nationwide histo-and cytopathology registry (PALGA) [6]. In Germany, biobanks at university hospitals have formed the German Biobank Association (GBA), coordinated by the German Biobank Node (GBN) of the European BBMRI-ERIC initiative, to coordinate the sampling, storage, and provision of research-relevant biospecimens from prospective studies as well as routine clinical care [7]. All these activities immediately raise the issue of adequate patient consent to legitimize the exchange and use of data and biomaterial.

Publisher Copyright:
© 2020, The Author(s), under exclusive licence to European Society of Human Genetics.


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