Chapter

Taking solidarity seriously: do biobank institutions have a moral obligation to inform their patients about incidental health findings?

Christian Lenk

in Human Tissue Research

Published in print March 2011 | ISBN: 9780199587551
Published online May 2011 | e-ISBN: 9780191725630 | DOI: http://dx.doi.org/10.1093/acprof:oso/9780199587551.003.0006
Taking solidarity seriously: do biobank institutions have a moral obligation to inform their patients about incidental health findings?

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It is a principle of research ethics, which also found expression in §30 of the Declaration of Helsinki, that every patient who participates in a research study should have access to the newly developed therapeutic and diagnostic measures in the end. However, it is doubtful in the case of medical studies in the framework of biobank institutions what kind of benefit participating donors of tissue or body material could have. One obvious possibility most participants of such studies would probably be interested in is the feedback of important individual health findings. This chapter compares legal, ethical, and institutional guidelines from different European countries and discusses the existing approaches in the framework of solidarity, which is often mentioned as a justification for research in population biobanks.

Keywords: biobanks; research ethics; solidarity; patient rights; biobank governance; feedback

Chapter.  5478 words. 

Subjects: Public Health and Epidemiology

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