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Research Articles

Generation Scotland: consulting publics and specialists at an early stage in a genetic database's development

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Pages 139-149 | Published online: 18 Jun 2008

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Berge Solberg & Kristin Solum Steinsbekk. (2015) Biobank consent models – are we moving toward increased participant engagement in biobanking?. Journal of Biorepository Science for Applied Medicine 3, pages 23-33.
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Conor M.W. Douglas, Bryn Lander, Cory Fairley & Janet Atkinson-Grosjean. (2015) The Roles of User/Producer Hybrids in the Production of Translational Science. Social Epistemology 29:3, pages 323-343.
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Don Chalmers, Rebekah E. McWhirter, Dianne Nicol, Tess Whitton, Margaret Otlowski, Michael M. Burgess, Simon J. Foote, Christine Critchley & Joanne L. Dickinson. (2014) New avenues within community engagement: addressing the ingenuity gap in our approach to health research and future provision of health care. Journal of Responsible Innovation 1:3, pages 321-328.
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David Wield. (2013) Bioeconomy and the global economy: industrial policies and bio-innovation. Technology Analysis & Strategic Management 25:10, pages 1209-1221.
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Theo Papaioannou. (2012) Democratic governance of genomics: the case of UK Biobank. New Genetics and Society 31:2, pages 111-133.
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Jennifer Smith-Merry. (2012) Experiential knowledge in action: Consulting practitioners for policy change. Policy and Society 31:2, pages 131-143.
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Articles from other publishers (28)

Jyothsna Bolleddula, Donald Simeon, Simon G. Anderson, Lester Shields, Jasneth Mullings, Pilar Ossorio, Averell Bethelmey & Anna Kasafi Perkins. (2022) No person left behind: Mapping the health policy landscape for genomics research in the Caribbean. The Lancet Regional Health - Americas 15, pages 100367.
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Grace Fox, Dean A. Fergusson, Zeinab Daham, Mark Youssef, Madison Foster, Evelyn Poole, Ayni Sharif, Dawn P. Richards, Kathryn Hendrick, Asher A. Mendelson, Kimberly F. Macala, Zarah Monfaredi, Joshua Montroy, Kirsten M. Fiest, Justin Presseau & Manoj M. Lalu. (2021) Patient engagement in preclinical laboratory research: A scoping review. EBioMedicine 70, pages 103484.
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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. (2021) Public involvement in the governance of population-level biomedical research: unresolved questions and future directions. Journal of Medical Ethics 47:7, pages 522-525.
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Daryl Pullman & Holly Etchegary. 2021. Clinical Epidemiology. Clinical Epidemiology 65 82 .
Lidia Luna Puerta, Will Kendall, Bethan Davies, Sophie Day & Helen Ward. (2020) The reported impact of public involvement in biobanks: A scoping review. Health Expectations 23:4, pages 759-788.
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Rachel Edwards, Archie Campbell & David Porteous. (2019) Generation Scotland participant survey on data collection. Wellcome Open Research 4, pages 111.
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Rachel Edwards, Archie Campbell & David Porteous. (2019) Generation Scotland participant survey on data collection. Wellcome Open Research 4, pages 111.
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Aaro Tupasela. (2016) Populations as brands in medical research: placing genes on the global genetic atlas. BioSocieties 12:1, pages 47-65.
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David Wield, Joyce Tait, Joanna Chataway, James Mittra & Michele Mastroeni. (2017) Conceptualising and practising multiple knowledge interactions in the life sciences. Technological Forecasting and Social Change 116, pages 308-315.
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Catherine Heeney. (2016) An “Ethical Moment” in Data Sharing. Science, Technology, & Human Values 42:1, pages 3-28.
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Tobias Hainz, Sabine Bossert & Daniel Strech. (2016) Collective agency and the concept of ‘public’ in public involvement: A practice-oriented analysis. BMC Medical Ethics 17:1.
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Sharon H. Baik, Mariana Arevalo, Clement Gwede, Cathy D. Meade, Paul B. Jacobsen, Gwendolyn P. Quinn & Kristen J. Wells. (2016) Development and Validation of the Biomedical Research Trust Scale (BRTS) in English and Spanish. Journal of Empirical Research on Human Research Ethics 11:4, pages 346-356.
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Louise Locock & Anne-Marie R. Boylan. (2016) Biosamples as gifts? How participants in biobanking projects talk about donation. Health Expectations 19:4, pages 805-816.
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Jonas Lander, Tobias Hainz, Irene Hirschberg, Sabine Bossert & Daniel Strech. (2016) Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review. Public Health Genomics 19:4, pages 193-202.
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Martyn Pickersgill, Paul Martin & Sarah Cunningham-Burley. (2014) The changing brain: Neuroscience and the enduring import of everyday experience. Public Understanding of Science 24:7, pages 878-892.
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Helena Machado & Susana Silva. (2015) Public participation in genetic databases: crossing the boundaries between biobanks and forensic DNA databases through the principle of solidarity. Journal of Medical Ethics 41:10, pages 820-824.
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Daryl Pullman & Holly Etchegary. 2015. Clinical Epidemiology. Clinical Epidemiology 369 382 .
Jonas Lander, Tobias Hainz, Irene Hirschberg & Daniel Strech. (2014) Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review. PLoS ONE 9:12, pages e113274.
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Helena Machado & Susana Silva. (2014) “Would you accept having your DNA profile inserted in the National Forensic DNA database? Why?” Results of a questionnaire applied in Portugal. Forensic Science International: Genetics 8:1, pages 132-136.
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Holly EtchegaryBrenda Wilson. (2013) Bringing personalized medicine to the community through public engagement. Personalized Medicine 10:7, pages 647-659.
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Caron Molster, Susannah Maxwell, Leanne Youngs, Gaenor Kyne, Fiona Hope, Hugh Dawkins & Peter O’Leary. (2011) Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice?. Health Expectations 16:2, pages 211-224.
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Blair H Smith, Archie Campbell, Pamela Linksted, Bridie Fitzpatrick, Cathy Jackson, Shona M Kerr, Ian J Deary, Donald J MacIntyre, Harry Campbell, Mark McGilchrist, Lynne J Hocking, Lucy Wisely, Ian Ford, Robert S Lindsay, Robin Morton, Colin N A Palmer, Anna F Dominiczak, David J Porteous & Andrew D Morris. (2013) Cohort Profile: Generation Scotland: Scottish Family Health Study (GS:SFHS). The study, its participants and their potential for genetic research on health and illness. International Journal of Epidemiology 42:3, pages 689-700.
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S. H. E. Harmon, G. Laurie & G. Haddow. (2013) Governing risk, engaging publics and engendering trust: New horizons for law and social science?. Science and Public Policy 40:1, pages 25-33.
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Harry Collins & Robert Evans. (2011) Sport-decision aids and the “CSI-effect”: Why cricket uses Hawk-Eye well and tennis uses it badly. Public Understanding of Science 21:8, pages 904-921.
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Mairi Levitt. (2011) Relating to Participants: How Close Do Biobanks and Donors Really Want to Be?. Health Care Analysis 19:3, pages 220-230.
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Wendy Lipworth, Rowena Forsyth & Ian Kerridge. (2011) Tissue donation to biobanks: a review of sociological studies. Sociology of Health & Illness 33:5, pages 792-811.
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Gill HaddowSarah Cunningham-Burley & Lorraine Murray. (2010) Can the governance of a population genetic data bank effect recruitment? Evidence from the public consultation of Generation Scotland. Public Understanding of Science 20:1, pages 117-129.
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Gillian Haddow. (2009) “We only did it because he asked us”: Gendered accounts of participation in a population genetic data collection. Social Science & Medicine 69:7, pages 1010-1017.
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