Biobank research: reporting results to individual participants

Abstract

Over the last years we conducted an extensive study on the question whether and, if so, how, any results to be derived from research with large scale biobanks shoud be communicated to individual research participants. More specifically, our research intended (1) to assess the attitudes and information preferences of major stakeholders (participants/researchers), and (2) to examine whether there are any legal obligations of researchers to provide feedback to individuals. Our aim was to elaborate a general normative framework that could provide (further) guidance in this matter and be taken into account in the establishment and operation of biobanks. In this article, we first summarize the results of the empirical study on attitudes and preferences; subsequently, address the legal aspects. The article ends with a section that discusses our main findings and provides the basis for the guiding principles we propose; the principles themselves are located in an Annex.