Optimising cohort data in Europe

tendency to think that they will be informed about any incidental findings. If we consider participants’ expectations as a resource for the creation of a participative collaboration platform (Pillar III), then we have to consider its source. Namely, if we ask participants to give up their privacy and their data, we will need to develop mechanisms with increased personal responsibility. First, participants’ expectations about potential benefits originate in significant causal ambiguity and social complexity: expectations of benefits from incidental findings are not necessarily aligned with privacy expectations. That is, participants are not necessarily prepared to give up their privacy preference, rights and needs in favour of benefits that may simply not be there. As long as this causal ambiguity and social complexity of participants’ expectations is not solved, we won’t be able to accurately evaluate the trade-offs between privacy, personal benefits and potential harm. The solution here is to consider privacy as a tangible and specialized resource that allows integrating participants’ expectations about potential benefits. In practice, we have to focus on privacy harms rather than privacy per se: privacy as a legal and ethical resource is supposed to protect participants from harm. As a result, participants’ expectations about potential benefits become specialised and tangible as well because they are tied to their study relationship with the researcher. Then, it is crucial to make these participants’ expectations about privacy and data uses, both explicit and negotiable. Tacit knowledge should be thus, translated into explicit knowledge through group problem-solving and decision-making for both participants and researchers. Through communication-intensive forms of knowledge integration, there should be room for discussion and consultations about what participants’ expectations entail and how they can be implemented in their particular context. The participants should be able to negotiate their scope of expectations for privacy with the researcher(s) and base their further agreement on data re-use for it. In order to effectively use and distribute research benefits as a resource, we also need to develop integrative and combinative capabilities to systematically measure and assess the nature, distribution and potential benefits of data use. Another way to ensure that research benefits are used and distributed effectively is to reinforce community engagement. Community engagement facilitates consent as it clarifies to participants what they are consenting to in the long term. Community engagement is a causally ambiguous resource because of the nature of cohort research. That is, the nature of cohort research is longitudinal and hence, the full impact of research results may be known only in the distant future. Community engagement can be reinforced though integrative knowledge mechanisms (such a group problem-solving and decision-making) that will increase data subjects’ literacy about the benefits and nature of research on the long term. Group problem-