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

Abstract 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 differe... Mehr ...

Verfasser: Richter, Gesine
Borzikowsky, Christoph
Lesch, Wiebke
Semler, Sebastian C.
Bunnik, Eline M.
Buyx, Alena
Krawczak, Michael
Dokumenttyp: Artikel
Erscheinungsdatum: 2020
Reihe/Periodikum: European Journal of Human Genetics ; volume 29, issue 3, page 495-502 ; ISSN 1018-4813 1476-5438
Verlag/Hrsg.: Springer Science and Business Media LLC
Schlagwörter: Genetics (clinical) / Genetics
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-26849670
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : http://dx.doi.org/10.1038/s41431-020-00735-3

Abstract 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.