Ethicists, regulators and researchers have struggled with the question of whether incidental findings in genomics studies should be disclosed to participants. In the ethical debate, a general consensus is that disclosed information should benefit participants. However, there is no agreement that genetic information will benefit participants, rather it may cause problems such as anxiety. One could get past this disagreement about disclosure of incidental findings by letting participants express their preferences in the consent form. We argue that this freedom of choice is problematic. In transferring the decision to participants, it is assumed that participants will understand what they decide about and that they will express what they truly want. However, psychological findings about people's reaction to probabilities and risk have been shown to involve both cognitive and emotional challenges. People change their attitude to risk depending on what is at stake. Their mood affects judgments and choices, and they over- and underestimate probabilities depending on whether they are low or high. Moreover, different framing of the options can steer people to a specific choice. Although it seems attractive to let participants express their preferences to incidental findings in the consent form, it is uncertain if this choice enables people to express what they truly prefer. In order to better understand the participants' preferences, we argue that future empirical work needs to confront the participant with the complexity of the uncertainty and the trade-offs that are connected with the uncertain predictive value of genetic risk information.

INTRODUCTIONHow do Europeans view biobanks? What do they know about them, and how do they want biobanks to operate? Where are the public sensitivities? And what do Europeans think about the fact that more and more biobanks are cooperating to build huge data infrastructures?These topics will be discussed in this working paper.How publics perceive biobank projects is of great importance for these projects and will considerably influence their development and future success. Biobanks are dependent not only on donors but also on societal and political support.When people participate in a biobank study, they typically donate blood, tissue, and body fluid, including DNA data. Donating bio-specimens is unlike donating blood for blood transfusions. Once the blood is donated, it disappears into a large system of blood supply (Waldby and Mitchell, 2007). However, in a biobank or cohort study, the samples attain their scientific value by being linked with personal information such as medical records and social and environmental data. Donated tissue or DNA has the potential to become a scientifictechnological resource for further research. This raises a range of ethical issues affecting donors and society including forms of consent, privacy and data protection, and benefit sharing.Our research shows that the public perception of biobanks in Europe is characterized by striking heterogeneity. While there is a cluster of North European countries that are rather enthusiastic about the prospect of biobank research, the publics of many Central and Southern European countries harbour substantial reservations when it comes to participating in biobank research, donating tissue, and giving broad consent for research. In this paper we describe the differing patterns in the public perception of Biobanks in Europe and explore with qualitative 2 and quantitative data what may underpin these different perceptions. We then discuss the implications of the findings for recruitment, operation, and governance of biobanks and suggest how Europe can move towards responsible innovation (von Schomberg 2011). MethodologyThe overall aim of our investigation was to analyse how people in Europe perceive biobanks and research using biobank data, and to identify the issues they consider to be of central importance and relevance. For this purpose, we created a comprehensive data set of qualitative and quantitative data using focus group and social survey methodologies.Focus group methodology is a well-established method in the social sciences. It is designed to explore, with groups of six to ten participants, the "whats" and "whys" lying behind people"s views, opinions, and articulations. The typical focus group in our study had a mix of gender, educational backgrounds, and ages corresponding to the average distribution in the European population (Krueger and Casey, 2009; Bloor et al, 2001). For our project this meant that the participants were purposely selected to represent the characteristics of the anticipated population of different European populat...

Incidental findings (IFs) are acknowledged to be among the most important ethical issues to consider in biobank research. Genome-wide association studies and disease-specific genetic research might reveal information about individual participants that are not related to the research purpose, but may be relevant to those participants' future health. In this article, we provide a synopsis of arguments for and against the disclosure of IFs in biobank research. We argue that arguments that do not distinguish between communications about pathogenic conditions and complex genetic risk for diseases fail, as preferences and decisions may be far more complex in the latter case. The principle of beneficence, for example, often supports the communication of incidentally discovered diseases, but if communication of risk is different, the beneficence of such communication is not equally evident. By conflating the latter form of communication with the former, the application of ethical principles to IFs in biobank research sometimes becomes too easy and frictionless. Current empirical surveys of people's desire to be informed about IFs do not provide sufficient guidance because they rely on the same notion of risk communication as a form of communication about actual health and disease. Differently designed empirical research and more reflection on biobank research and genetic risk information is required before ethical principles can be applied to support the adoption of a reasonable and comprehensive policy for handling IFs.