Always expect the unexpected - new CSG-report on biobanks
12 Nov 2009
The emergence of large-scale genetic research - also called ‘genomics’ – has greatly boosted the study of tissues and patient data in biobanks. A side effect is that researchers can uncover results that may be highly relevant to the health of individual patients. This in turn gives rise to a range of questions of a factual, ethical and legal nature. How much do people want to know about findings that could indicate future health risks or benefits? Is a biobank obliged to report research results to individual participants? In which cases should it - whether or not of its own accord - do so? And what form should this communication with participants of biobanks take?In this report, researchers of the Amsterdam Academic Medical Centre (AMC) conclude, backed by empirical and legal study, that biobanks have no alternative but to ask themselves these questions and develop clear policy in this area. The study formulates a number of ‘guiding principles’ for such a policy.
Download 'Always expect the unexpected'