Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Broad consent – the act of gaining one consent for multiple potential future research projects – sits at the core of much current genomic research practice. Since the 25th May 2018, the General Data Protection Regulation (GDPR) has applied as valid law concerning genomic research in the EU and now occupies a dominant position in the legal landscape. Yet, the position of the GDPR concerning broad consent has recently been cause for concern in the genomic research community. Whilst the text (...) of the GDPR apparently supports the practice, recent jurisprudence contains language which is decidedly less positive. This article takes an in-depth look at the situation concerning broad consent under the GDPR and – despite the understandable concern flowing from recent jurisprudence – offers a positive outlook. This positive outlook is argued from three perspectives, each of which is significant in defining the current, and ongoing, legitimacy and utility of broad consent under the GDPR: the principled, the legal technical, and the practical. (shrink)

The NIH-funded Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Initiative has led to significant advances in what we know about the functions and capacities of the brain. This multifaceted and expansive effort supports a range of experimentation from cells to circuits, and its outputs promise to ease suffering from various neurological injuries, diseases, and neuropsychiatric conditions. At the midway point of the 10-year BRAIN Initiative, we pause to consider how these studies, and neuroscience research more broadly, may bear on human (...) characteristics and moral concepts such as identity, agency, and others. This midway point also offers us an opportunity to evaluate the sociology and impacts of BRAIN Initiative-funded investigations to ensure that ethical standards of fairness and justice pervade the scientific process itself. Neuroethics inquiry provides a mechanism to invite relevant, novel expertise from the wide array of disciplines that intersect with biomedicine in neuroscience research. As the BRAIN Initiative and the broader field of neuroscience proceed, neuroethics serves as a central component of neuroscience inquiry to i) foster necessary and beneficial collaborations for responsible discovery; ii) ensure a rigorous, reproducible, and representative neuroscience research process; and iii) explore the unique nature of study of the human brain through accurate and representative models of its function and dysfunction. (shrink)