New models of data governance for health data are a focus of growing interest in an era of challenge to the social licence. In this article, we reflect on what the data trust model, which is founded on principles of participatory governance, can learn from experiences of involving and engagement of members of the public and participants in the governance of large-scale biobanks. We distinguish between upstream and ongoing governance models, showing how they require careful design and operation if they (...) are to deliver on aspirations for deliberation and participation. Drawing on this learning, we identify a set of considerations important to future design for data trusts as they seek to ensure just, proportionate and fair governance. These considerations relate to the timing of involvement of participants, patterns of inclusion and exclusion, and responsiveness to stakeholder involvement and engagement. We emphasise that the evolution of governance models for data should be matched by a commitment to evaluation. (shrink)

ObjectiveTo investigate the attitudes of Chinese parents regarding the storage of dried blood spots collected for newborn screening (NBS) and their use in research.MethodsWe conducted a hospital-based survey of parents and examined parental attitudes regarding (a) allowing NBS sample storage, (b) permitting use of children’s NBS samples for research with parental permission, and (c) permitting use of children’s NBS samples for research without parental permission.ResultsThe response rate was 52 percent. Of parents surveyed, 68 percent would permit their infant’s NBS sample (...) to be stored for at least some length of time. If permission is obtained, 69 percent of parents “strongly agreed” or “agreed” to permit use of the NBS sample for research. If permission is not obtained, only 14 percent of parents “strongly agreed” or “agreed.” There was no significant association between permitting use of NBS samples for research and parental gender, education, household income, number of children, or site of residence.ConclusionsThis is the first survey of Chinese parents regarding the use of NBS samples for different types of research, with results indicating that most parents would permit their infant’s sample to be stored and would support the use of NBS dried blood spots for research purposes. (shrink)