BackgroundGenomic and biosocial research data about individuals is rapidly proliferating, bringing the potential for novel opportunities for data integration and use. The scale, pace and novelty of these applications raise a number of urgent sociotechnical, ethical and legal questions, including optimal methods of data storage, management and access. Although the open science movement advocates unfettered access to research data, many of the UK’s longitudinal cohort studies operate systems of managed data access, in which access is governed by legal and ethical agreements between stewards of research datasets and researchers wishing to make use of them. Amongst other things, these agreements aim to respect the reasonable expectations of the research participants who provided data and samples, as expressed in the consent process. Arguably, responsible data management and governance of data and sample use are foundational to the consent process in longitudinal studies and are an important source of trustworthiness in the eyes of those who contribute data to genomic and biosocial research.MethodsThis paper presents an ethnographic case study exploring the foundational principles of a governance infrastructure for Managing Ethico-social, Technical and Administrative issues in Data ACcess (METADAC), which are operationalised through a committee known as the METADAC Access Committee. METADAC governs access to phenotype, genotype and ‘omic’ data and samples from five UK longitudinal studies.FindingsUsing the example of METADAC, we argue that three key structural features are foundational for practising responsible data sharing: independence and transparency; interdisciplinarity; and participant-centric decision-making. We observe that the international research community is proactively working towards optimising the use of research data, integrating/linking these data with routine data generated by health and social care services and other administrative data services to improve the analysis, interpretation and utility of these data. The governance of these new complex data assemblages will require a range of expertise from across a number of domains and disciplines, including that of study participants. Human-mediated decision-making bodies will be central to ensuring achievable, reasoned and responsible decisions about the use of these data; the METADAC model described in this paper provides an example of how this could be realised.

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Purpose – The paper aims to examine a strategic decision model and its potential value for assisting academic institutional leaders in addressing climate change by making better informed sustainability investment decisions. Design/methodology/approach – Although the vast majority of engagements have focused on IT project selection and prioritization, it will be demonstrated that there is direct applicability to capital investment decisions related to sustainability. Examples of the results are provided with instructions on how to implement a similar approach for organizations challenged with selection and prioritization of sustainability projects. Finally, the model is assessed critically in terms of challenges and lessons learned from client projects. Findings – The strategic decision model has been found to provide a broader framework for decisions, i.e. both qualitative and quantitative. At the same time, the methodology used with the model engages more stakeholders in the process to help build consensus regarding investment and project decisions. As a portfolio-based model, relative value and risk can be viewed easily to enable focus on what the stakeholders believe to be key projects. This perspective and the functionality of the application enable action to be taken by the decision maker to possibly reduce project risk and/or increase potential value of specific projects. Research limitations/implications – It was determined that additional research, data collection and application development would be necessary if the model were to be used for benchmarking for sustainability planning investment decisions. Practical implications – The paper proposes that colleges and universities consider the use of the portfolio decision model and, where appropriate, implement the model as part of their sustainability program. The anticipated benefits of this action would include: greater involvement of key stakeholders in support of required organizational change, improvement in the quality of investment decisions, increased success of sustainability projects and data which will enable future benchmarking. Originality/value – Given this emergent leading role of universities in championing sustainability efforts, the purpose of this paper is to provide college and university leaders a tool to address the challenges related to investment decisions targeted at sustainability projects, such as environmental footprint reduction in support of achieving sustainability for their respective institutions.