Ethics in the Life Sciences – Expert reports by the DRZE; Volume 19
Dirk Lanzerath / Thomas Illig / Inga Bernemann / Nils Hoppe / Jürgen Robienski

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

How "sensitive data" becomes "big data"

Human biobanks are collections of samples of human bodily substances (such as tissue, blood and genetic material) which are digitally linked to individual donor data and especially health-related information. Human biobanks constitute an essential resource for biomedical research on causes and mechanisms of numerous diseases and their diagnosis and treatment. In the building and management of human biobanks, the objectives of medical research and freedom of research are to be brought into accordance with the rights and interests of donors and patients. As a consequence, biobanks raise ethical and legal questions ranging from the protection of individual personal rights to the global regulation of research infrastructures. This expert report is an introduction to this field and informs about the biomedical basic principles of managing human biobanks, their legal regulations and the associated ethical debates.

DOI: 10.23769/vka-2020-49037   open access

ISBN: 978-3-495-49037-2

Publisher: Verlag Karl Alber, Freiburg

Year of publication: 2019

Pages: 144

Language: German

Price: 18,- € (paperback)