Humanbiobanken

authored by

Dieter Sturma, Dirk Lanzerath, Thomas Illig, Inga Bernemann, Nils Hoppe, Jürgen Robienski

Abstract

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.

Organisation(s)

Centre for Ethics and Law in the Life Sciences
Institute of Philosophy

External Organisation(s)

German Reference Centre for Ethics in Biosciences
University of Bonn
Institute of Science and Ethics (IWE)
Hannover Medical School (MHH)

Type

Monograph

No. of pages

144

Publication date

2019

Publication status

Published

Sustainable Development Goals

SDG 3 - Good Health and Well-being

Electronic version(s)

https://doi.org/10.23769/vka-2020-49037 (Access: Open)