Ethics in the Life Sciences – Expert reports by the DRZE; Volume 22
Laura Summa / Ulrich Mansmann / Benedikt Buchner / Maximilian Schnebbe

Under the responsibility of the German Reference Centre for Ethics in the Life Sciences
published by Dieter Sturma and Dirk Lanzerath

Big data in medicine and the possibility of rapidly collecting and analysing health data from various sources on a large scale are linked with high expectations. Information technologies are being used to develop comprehensive and personalised therapies, predictions, and new means of prevention. In medical research, health data is expected to be analysed repeatedly with respect to new research questions as well as to be collected in large amounts without any specific purpose.

However, normative challenges arise when it comes to the use of big data in medicine, including especially potential privacy breaches, limitations of autonomy, restrictions of individual data control and the consequences of health care commercialisation. To outweigh the advantages of big data use with its risks, regulatory requirements aim increasingly at restricting the purpose and extent of the use of personalised health data. From an ethical perspective, consent models are developed or created to protect the autonomy of the participants involved. A major goal of these initiatives is the development of guidelines establishing and assuring trust in involved institutions.

The present expert report provides an overview of the technical and organisational status of big data in medicine, considers basic juridical questions and outlines a possible ethical framework for the application of big data in medicine.

DOI: 10.23769/vka-2020-49191   open access

ISBN: 978-3-495-49191-1

Publisher: Verlag Karl Alber, Freiburg

Year of publication: 2020

Pages: 124

Language: German

Price: 19,- € (paperback)