Eighty Dutch investigators (response 41%) involved in biobank research responded to a web-based survey addressing communication of results of biobank research to individual participants. Questions addressed their opinion towards an obligation to communicate results and related issues such as ownership of blood samples, privacy, therapeutic relationship, costs and implications for participants. Most researchers (74%) indicated that participants only have to be informed when results have implications for treatment or prevention. Researchers were generally not inclined to provide more feedback to patients as compared with healthy participants, nor were they inclined to provide feedback in return for participants' contribution to the biobank. Our results demonstrate major and significant differences in opinion about the feedback of individual results within the community of biobank researchers.
INTRODUCTIONTo understand the interplay of genetic and non-genetic factors in the origin of multifactorial diseases, biobank initiatives have been launched worldwide. One of the greatest promises of research involving biobanks is that it will lead to individualized medicine. This optimism is counterbalanced by concerns about the ethical, legal and social implications of genomics research. One of the discussions relates to the obligation of biobank researchers to provide feedback to individual participants about research results in general, and individual genetic variations in particular. [1][2][3][4][5][6][7] Issues related to the communication of results comprise among other a lack of clarity about what may constitute research results (with discussions about validity, clinical significance and incidental findings versus expected research results); how to accommodate participant preferences in informed consent procedures; the risk of breaching confidentiality and/or fostering therapeutic misconception, that is, the blurring of the relevant distinction between research practice and clinical care; and how to ensure proper disclosure given the complexity of the information and the costs involved.Professionals involved in genetic research are key figures in this debate. However, only few studies addressed their opinion on this issue. [8][9][10][11] We surveyed researchers involved in biobanks to study their opinions towards an obligation to return research results to participants and related issues such as ownership of blood samples, privacy, therapeutic relation, costs and implications for participants.