Relating to participants: How close do biobanks and donors really want to be?

Health Care Analysis

Volumn 19, Issue 3, 2011, Pages 220-230

  Levitt, Mairi ^a  

^a LANCASTER UNIVERSITY   (United Kingdom)

Author keywords

ALSPAC; Generation Scotland; Public engagement; UK Biobank

Indexed keywords

ARTICLE; DONOR; GENETICS; HEALTH CARE FACILITY; HUMAN; INTERPERSONAL COMMUNICATION; PUBLIC OPINION; PUBLIC RELATIONS; UNITED KINGDOM;

BIOLOGICAL SPECIMEN BANKS; COMMUNICATION; COMMUNITY-INSTITUTIONAL RELATIONS; GENETIC RESEARCH; GREAT BRITAIN; HUMANS; PUBLIC OPINION; TISSUE DONORS;

EID: 80855139727     PISSN: 10653058     EISSN: None     Source Type: Journal    
DOI: 10.1007/s10728-011-0193-9     Document Type: Article

References (34)

1. ALSPAC Members. (2011). http://www.bristol.ac.uk/alspac/participants/. Accessed 6 Sep 2011.
2. ALSPAC 'Size zero is bad for bones'. Press release 5th January 2010. http://www.bristol.ac.uk/alspac/documents/pr-fat-levels-affect-bone-growth.pdf. Accessed 6 Sep 2011.
3. ALSPAC Newsletters for parents and young people. (2011). Found at http://www.bristol.ac.uk/alspac/participants/newsletter/. Accessed 6 Sep 2011.
4. BBC news channel. (2011). Born abroad. An immigration map of Britain. Scotland. http://news.bbc.co.uk/1/shared/spl/hi/uk/05/born-abroad/countries/ html/scotland.stm. Accessed 6 Sep 2011.
5. Chadwick, R., & Levitt, M. (2006). Genetic technology-a threat to deafness? In H. Kuhse & P. Singer (Eds.), Bioethics: An anthology (pp. 137-144). Blackwell: Oxford.
6. Craig Ross Dawson. (2000). Public perceptions of the collection of human biological samples. The Wellcome Trust. MRC. http://www.ukbiobank.ac.uk/docs/ perceptions.pdf. Accessed 6 Sep 2011.
7. SD Emery A Middleton GH Turner 2010 Whose deaf genes are they anyway? The deaf community challenge to legislation on embryo selection Sign Language Studies 10 2 155 169 10.1353/sls.0.0037
8. European Court of Human Rights Council of Europe Case of S and Marper vs United Kingdom. (Applications nos. 30562/04 and 30566/04) 4th December 2008. http://www.bailii.org/eu/cases/ECHR/2008/1581.html. Accessed 6 Sep 2011.
9. Generation Scotland. (2007). Press Release http://www.generationscotland. org/images/stories/UKBiobank-Press-Release-Jun07.pdf. Accessed 6 Sep 2011.
10. Generation Scotland Website. (2011). http://www.generationscotland.org. Accessed 6 Sep 2011.
11. B Godard J Marshall C Laberge 2007 Community engagement in genetic research: Results of the first public consultation for the Quebec CARTaGENE Project Community Genetics 10 3 147 158 17575459 10.1159/000101756 (Pubitemid 46944290)
12. G Haddow S Cunningham-Burley L 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 1 117 129 10.1177/0963662510361655
13. G Haddow S Cunningham-Burley A Bruce S Parry 2008 Generation Scotland: Consulting publics and specialists at an early stage in a genetic database's development Critical Public Health 18 2 139 149 10.1080/09581590701824086 (Pubitemid 351895239)
14. Haimes, E., & Whong-Barr, M. (2004). Levels and styles of participation in genetic databases: Case study of the north cumbria community genetics project. In R. Tutton & O. Corrigan (Eds.), Genetic databases: Socio-ethical issues in the collection and use of DNA. London: Routledge.
15. N Hallowell 2008 Encounters with medical professionals: A crisis of trust or a matter of respect? Medicine, Health Care and Philosophy 11 4 427 437 10.1007/s11019-008-9156-9
16. Human Genetics Commission. (2009). Nothing to hide nothing to fear. A report by the Human Genetics Commission November 2009. Department of Health. www.dh.gov.uk/publications. Accessed 6 Sep 2011.
17. M Levitt S Weldon 2005 A well placed trust? Public perceptions of the governance of DNA databases Critical Public Health 15 4 311 321 10.1080/09581590500523186 (Pubitemid 43354868)
18. McCall, B. (2006). Children of the 90s. The Avon longitudinal study of parents and children. http://genome.wellcome.ac.uk/doc-WTX036456.html. Accessed 6 Sep 2011.
19. Minnie Sample Richard Tutton 2008 Biobank as biographical disruption: Conversations on some first person reflections Medical Sociology on-line 3 2 15 24
20. National DNA Ethics Group. (2008). First annual report of the Ethics Group: National DNA Database. April 2008. http://www.parliament.uk/deposits/ depositedpapers/2008/DEP2008-1997.pdf. Accessed 6 Sep 2011.
21. Pahl, R. (2000). On friendship. Cambridge: Polity Press.
22. People Science & Policy. (2003). UK Biobank consultation on the ethical and governance framework. Prepared for MRC/Wellcome Trust. People Science & Policy Ltd. http://www.ukbiobank.ac.uk/docs/people-science-policy. pdf. Accessed 6 Sep 2011.
23. People Science & Policy. (2002). Biobank UK: A question of trust. A consultation exploring and addressing questions of public trust. Prepared for MRC/Wellcome Trust. London: People Science & Policy Ltd.
24. Shapps G. (2006). Report into regional inconsistencies regarding retention of innocent children's DNA data across England and Wales.
25. Shickle, D., Hapgood, R., & Kent, A. (2001). Consultation with primary care health professionals on issues relating to the recruitment of patients to a DNA collection study. MRC /Wellcome Trust.
26. Shickle, D., Hapgood, R., Carlisle, J., McCabe, C., Shackley, P., & Morgan, A. (2003). Public attitudes to participating in UK Biobank. A public consultation on issues relating to feedback, consent, withdrawal and access. School of Health and Related research (ScHARR). University of Sheffield. http://www.shef.ac.uk/content/1/c6/02/15/60/FinalReport.pdf. Accessed 6 Sep 2011.
27. UK Biobank. (2003). Consultation with industry workshop. 4th April 2003 Minutes. http://www.ukbiobank.ac.uk/docs/Industry-Workshop.pdf. Accessed 6 Sep 2011.
28. UK Biobank. (2011). Ethics and Governance Council. http://www. egcukbiobank.org.uk/. Accessed 6 Sep 2011.
29. UK Biobank Ethics Governance Council. (2009). Workshop report: Involving publics in biobank research and governance. London: Wellcome Trust.
30. UK Biobank Press Releases. (2011). http://www.ukbiobank.ac.uk/news/ releases.php. Accessed 6 Sep 2011.
31. UK Biobank Website. (2011). http://www.ukbiobank.ac.uk/. Accessed 6 Sep 2011.
32. Wallace, S., Bédard, K., & Knoppers, B. M. (2008). Building a model framework for the governance of biobanks Ethics and Policymaking Core, Centre de recherche en droit public (CRDP), Université de Montréal. P3G Observatory http://www.p3gobservatory.org/repository/ ethics.htm;jsessionid=DE7BB9F995DFB27F1796E3240E30E04A. Accessed 6 Sep 2011.
33. Webster, A., Brown, N., Douglas, C., Lewis, G., Kaye, J., Tutton, R., et al. (2008). Public attitudes to third party access and benefit sharing: their application to UK Biobank UK Biobank Ethics and Governance Council. http://www.egcukbiobank.org.uk/meetingsandreports/index.html. Accessed 6 Sep 2011.
34. Williams, G. (2011). Children as means and ends in large-scale medical research. Bioethics, 25. doi: 10.1111/j.1467-8519.2010.01873.x.