BackgroundThe past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public responses (...) as well as important areas for further research.MethodsThis paper reports a systematic review and thematic synthesis of qualitative studies examining public attitudes towards the sharing or linkage of health data for research purposes. Twenty-five studies were included in the review. The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries. The included studies were conducted between 1999 and 2013. The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews.ResultsKey themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research. The results identify a growing body of evidence pointing towards widespread general—though conditional—support for data linkage and data sharing for research purposes. Whilst a variety of concerns were raised in cases where participants perceived there to be actual or potential public benefits from research and had trust in the individuals or organisations conducting and/or overseeing data linkage/sharing, they were generally supportive. The studies also find current low levels of awareness about existing practices and uses of data.ConclusionsWhilst the results indicate widespread public support for data sharing and linkage for research purposes, a range of concerns exist. In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

The digitization of society and academic research endeavours have led to an explosion of interest in the potential uses of population data in research. Alongside this, increasing attention is focussing on the conditions necessary for maintaining a social license for research practices. Previous research has pointed to the importance of demonstrating “public benefits” from research for maintaining public support, yet there has been very little consideration of what the term “public benefits” means or what public expectations of “public benefits” are. (...) In order to address this pressing issue a series of deliberative workshops with members of the public were held across Scotland in May and June 2017. The workshops aimed to engage a cross-section of the Scottish population in in-depth discussions of the ways that the public – or publics – might benefit from data-intensive health research. The findings reported here discuss workshop participants’ understandings and expectations of health research; who they considered to be “the public” that should benefit from health research and; in what ways they felt “the public” should benefit. Workshop participants’ preference was clearly for the widest possible public benefit to be felt by all, but they also acknowledged the value in research aiming to primarily benefit vulnerable groups within society. A key focus of discussions was the extent to which workshop participants were confident that potential public benefits would be realised. A crucial consideration then is the extent to which mechanisms and political support are in place to realise and maximise the public benefits of data-intensive health research. (shrink)

While parents have long received guidance on how to raise children, a relatively new element of this involves explicit references to infant brain development, drawing on brain scans and neuroscientific knowledge. Sometimes called ‘brain-based parenting’, this has been criticised from within sociological and policy circles alike. However, the engagement of parents themselves with neuroscientific concepts is far less researched. Drawing on 22 interviews with parents/carers of children living in Scotland, this article examines how they account for their use of concepts (...) and understandings relating to neuroscience. Three normative tropes were salient: information about children’s processing speed, evidence about deprived Romanian orphans in the 1990s, and ideas relating to whether or not children should ‘self-settle’ when falling asleep. We interrogate how parents reflexively weigh and judge such understandings and ideas. In some cases, neuroscientific knowledge was enrolled by parents in ways that supported biologically reductionist models of childhood agency. This reductionism commonly had generative effects, enjoining new care practices and producing particular parent and infant subjectivities. Notably, parents do not uncritically adopt or accept neurobiological and/or psychological knowledge; rather, they reflect on whether and when it is applicable to and relevant for raising their children. Thus, our respondents draw on everyday epistemologies of parenting to negotiate brain-based understandings of infant development and behaviour, and invest meaning in these in ways that cannot be fully anticipated within straightforward celebrations or critiques of the content of parenting programmes drawing on neuropsychological ideas. (shrink)

This article explores the accounts of eugenics made by a small but important group of British scientists and clinicians working on the new genetics as applied to human health. These scientists and clinicians used special rhetorical strategies for distancing the new genetics from eugenics and to sustain their professional autonomy. They drew a number of boundaries or distinctions between eugenics and their own field, describing eugenics as politically distorted "bad science, " as being technically unfeasible, a feature of totalitarian regimes, (...) the abuse of neutral knowledge, and as the manipulation of the population's gene pool as opposed to diagnosing and treating individuals with genetic conditions. Their more sophisticated defense strategies invoked the importance of individual choice and the relationship between nature and nurture. The article highlights the ambiguities and difficulties in professionals' use of this rhetoric, drawing on historical and sociological analyses of eugenics, genetics, and medical science and technology more broadly. (shrink)