Introduction Clinical trials involving patients with Alzheimer's disease (AD) continue to try to identify disease‐modifying treatments. Although trials are designed to meet regulatory and registration requirements, many do not measure outcomes of the disease most relevant to key stakeholders. Methods A systematic review sought research that elicited information from people with AD, their caregivers, and health‐care professionals on which outcomes of the disease were important. Studies published in any language between 2008 and 2017 were included. Results Participants in 34 studies described 32 outcomes of AD. These included clinical (memory, mental health), practical (ability to undertake activities of daily living, access to health information), and personal (desire for patient autonomy, maintenance of identity) outcomes of the disease. Discussion Evidence elicited directly from the people most affected by AD reveals a range of disease outcomes that are relevant to them but are not commonly captured in clinical trials of new treatments.

Alzheimer's disease (AD) research, treatment, and prevention focus increasingly on developing personalized interventions based on personal genetic, biological, phenotypic data, for early intervention (EI) to limit harm. This approach has much to recommend it, but important ethical and philosophical challenges follow that should be considered, which we analyze here. We argue that advancing understanding of the causes of AD undermines the clarity of the distinction between primary and secondary prevention. This makes it increasingly unclear how primary and secondary categories can be appealed to as the basis for making judgements about what interventions are permissible, and for distinguishing between acceptably vs unacceptably early points in life to intervene. Timely efforts at prevention are vital for limiting harm from AD and given the logic of EI is that, in presence of risk, earlier is better, one might assume that earliest is best. This may or may not be the case; however, the permissibility of intervening in different ways at different stages of life is complex and turns on numerous contextual factors. We consider the particular ethical implications of intervening at different points in the life course, presenting a valuable resource for negotiating clinical and policy implications of EI in AD.

Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating this. Platform-based approaches thus require new thinking about consent. Here we defend an approach to meeting this challenge within the data platform model, grounded in: the notion of ‘reasonable expectations’ for the reuse of data; Waldron’s account of ‘integrity’ as a heuristic for managing disagreement about the ethical permissibility of the approach; and the element of the social contract that emphasises the importance of public engagement in embedding new norms of research consistent with changing technological realities. While a social contract approach may sound appealing, however, it is incoherent in the context at hand. We defend a way forward guided by that part of the social contract which requires public approval for the proposal and argue that we have moral reasons to endorse a wider presumption of data reuse. However, we show that the relationship in question is not recognisably contractual and that the social contract approach is therefore misleading in this context. We conclude stating four requirements on which the legitimacy of our proposal rests.