Secondary research use of personal medical data: patient attitudes towards data donation

BMC Medical Ethics

Bimba Franziska Hoyer¹  Matthias Laudes²  Gesine Richter³  Christoph Borzikowsky⁴  Michael Krawczak⁴ 

[1] Department of Internal Medicine 1, University Hospital Schleswig-Holstein, Kiel, Germany;Division of Endocrinology, Diabetes and Clinical Nutrition, Department of Medicine 1, University Hospital Schleswig-Holstein, Kiel, Germany;Institute of Experimental Medicine, Division of Biomedical Ethics, Kiel University, University Hospital Schleswig-Holstein, Niemannsweg 11, Haus 1, 24105, Kiel, Germany;Institute of Medical Informatics und Statistics, Kiel University, University Hospital Schleswig-Holstein, Kiel, Germany;

关键词: Data donation;    Patient consent;    Medical research;    Secondary data use;    Precision medicine;    Public health;   

DOI  :  10.1186/s12910-021-00728-x

来源: Springer

【 摘 要 】

BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law.

【 授权许可】

CC BY