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  1.  16
    Public Responses to the Sharing and Linkage of Health Data for Research Purposes: A Systematic Review and Thematic Synthesis of Qualitative Studies.Mhairi Aitken, Jenna de St Jorre, Claudia Pagliari, Ruth Jepson & Sarah Cunningham-Burley - 2016 - BMC Medical Ethics 17 (1):73.
    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 (...)
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  2.  4
    Public Involvement in the Governance of Population-Level Biomedical Research: Unresolved Questions and Future Directions.Sonja Erikainen, Phoebe Friesen, Leah Rand, Karin Jongsma, Michael Dunn, Annie Sorbie, Matthew McCoy, Jessica Bell, Michael Burgess, Haidan Chen, Vicky Chico, Sarah Cunningham-Burley, Julie Darbyshire, Rebecca Dawson, Andrew Evans, Nick Fahy, Teresa Finlay, Lucy Frith, Aaron Goldenberg, Lisa Hinton, Nils Hoppe, Nigel Hughes, Barbara Koenig, Sapfo Lignou, Michelle McGowan, Michael Parker, Barbara Prainsack, Mahsa Shabani, Ciara Staunton, Rachel Thompson, Kinga Varnai, Effy Vayena, Oli Williams, Max Williamson, Sarah Chan & Mark Sheehan - forthcoming - Journal of Medical Ethics:medethics-2020-106530.
    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 (...)
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  3.  2
    Neurobiological Limits and the Somatic Significance of Love: Caregivers’ Engagements with Neuroscience in Scottish Parenting Programmes.Tineke Broer, Martyn Pickersgill & Sarah Cunningham-Burley - 2020 - History of the Human Sciences 33 (5):85-109.
    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 (...)
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    Who Benefits and How? Public Expectations of Public Benefits From Data-Intensive Health Research.Sarah Cunningham-Burley, Emily Creamer, Carol Porteous & Mhairi Aitken - 2018 - Big Data and Society 5 (2).
    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. (...)
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  5. Eugenics and the New Genetics in Britain: Examining Contemporary Professionals' Accounts.Amanda Amos, Sarah Cunningham-Burley & Anne Kerr - 1998 - Science, Technology and Human Values 23 (2):175-198.
    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, (...)
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  6. Tokens of Trust or Token Trust? Public Consultation and "Generation Scotland".Gill Haddow & Sarah Cunningham-Burley - 2008 - In Julie Brownlie, Alexandra Greene & Alexandra Howson (eds.), Researching Trust and Health. Routledge.
     
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