Human biobanks for research
Human biobanks collect not only biological material, e. g. samples of blood, saliva or stool, but also associated personal data, like the donor’s physical activity, profession or diet. From a legal perspective, this storage of personal data in combination with the biological material is a particular challenge. An overview of the legal basis regulating the use of genetic samples as well as the personal data for research is, inter alia, provided here:
Hoppe, N. / Robienski, J. (2019): Rechtliche Aspekte. In: Sturma, D. / Lanzerath, D. (eds.): Humanbiobanken. Ethik in den Biowissenschaften – Sachstandsbericht des DRZE, Vol. 19. Freiburg i. Br. / München: Verlag Karl Alber, 40–87, especially 52–67. (German)
Human biobanks are potentially important catalysts for health and research objectives, which serve the common good. However, in addition to legal questions, the collection of sensitive personal data also raises normative questions. The establishment and operation of human biobanks may result in a conflict between personal rights of the donors and the possible benefits for the common good and the society. Hereby, aspects of informational self-determination and personal control over body parts come in the focus of an ethical analysis, which, among others, can be found here:
Lanzerath, D. (2019): Ethische Aspekte. In: Sturma, D. / Lanzerath, D. (eds.): Humanbiobanken. Ethik in den Biowissenschaften – Sachstandsbericht des DRZE, Vol. 19. Freiburg i. Br. / München: Verlag Karl Alber, 87–143, especially. 88–93, 98–129. (German)
On 15 June 2010, the German Ethics Council published an opinion on human biobanks for research:
German Ethics Council (2010): Human biobanks for research. Opinion of 15 June 2010. Online Version