Public and private interests in the genomic era: A pluralist approach

Ethics, Law and Society

Volumn , Issue , 2009, Pages 205-216

  Sutrop, Margit ^a   Simm, Kadri ^a  

^a UNIVERSITY OF TARTU   (Estonia)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84855580807     PISSN: None     EISSN: None     Source Type: Book    
DOI: None     Document Type: Chapter

References (40)

1. The Academy of Medical Sciences (ed.) (2006) Personal Data for Public Good: Using Health Information in Medical Research: A Report from the Academy of Medical Sciences.
2. Allen, G. (1972) 'Eugenics', in D.L. Sills and R.K. Merton (eds), International Encyclopedia of the Social Sciences (NY: Macmillan), 5-6.
3. Árnason, V. (2004) 'Coding and consent: Moral challenges of the database project in Iceland', Bioethics, 18, 36-61.
4. Ashcroft, R.E. (2004) 'From public interest to political justice', Cambridge Quarterly of Healthcare Ethics, 13, 20-27.
5. Austin, M.A., Harding, S.E. and McElroy, C. (2003a) 'Genebanks: A comparison of eight proposed international genetic databases', Community Genetics, 6, 37-45.
6. Austin, M.A., Harding, S.E. and McElroy, C. (2003b) 'Monitoring ethical, legal and social issues in developing population genetic databases', Genetics in Medicine, 5:6, 451-457.
7. Australian Law Reform Commission (2003) Essentially Yours: The Protection of Human Genetic Information in Australia: Report (ALRC 96).
8. Cambon-Thomsen, A., Rial-Sebbag, E. and Knoppers, B.M. (2007) 'Trends in ethical and legal frameworks for the use of human biobanks', The European Respiratory Journal, 30: 2, 373-382.
9. Care Records Development Board Ethics Advisory Group (ed.) (2004) Ethical Issues of Consent to Recording and Disclosure of Health Records (London: Department of Health).
10. Chadwick, R. and Berg, K. (2001) 'Solidarity and equity: New ethical frameworks for genetic databases', Nature Reviews: Genetics, 2, 318-321.
11. Chadwick, R. and Wilson, S. (2004) 'Genomic databases as global public goods?', Res Publica, 10: 2, 123-134.
12. Chang, R. (2004) Putting Together Morality and Well-Being, in P. Baumann and M. Betzler (eds), Practical Conflicts (Cambridge: Cambridge University Press), 118-158.
13. Goldworth, A. (1999) 'Informed consent in the genetic age', Cambridge Quarterly of Healthcare Ethics, 8, 393-400.
14. Goldworth, A. (2003) 'An empirical survey on biobanking of human genetic material and data in six EU countries', European Journal of Human Genetics, 11, 475-488.
15. HUGO Ethics Committee Statement on Human Genomic Databases (2002).
16. Kaye, J. (2007) 'The legal jigsaw governing population genetic databases: Concluding remarks on the ELSAGEN legal findings', in M. Häyry, R.Chadwick, V. Árnason and G. Árnason (eds), The Ethics and Governance of Human Genetic Databases: European Perspectives (Cambridge: Cambridge University Press), 141-145.
17. Kaye, J., Helgason, H.H., Nõmper, A., Sild, T. and Wendel, L. (2004) 'Population genetic databases: A comparative analysis of the law in Iceland, Sweden, Estonia and UK', Trames, 8, 15-33.
18. Kekes, J. (1993) The Morality of Pluralism (Princeton, New Jersey: Princeton University Press).
19. Knoppers, B.M. (2000) 'From medical ethics to "genethics"', Lancet, 356 Supplement, s38-s38.
20. Knoppers, B.M. and Chadwick, R. (2005) 'Human genetic research: Emerging trends in ethics', Nature Reviews: Genetics, 6, 75-79.
21. Norheim, O.F. (2006) 'Soft paternalism and the ethics of shared electronic patient records', BMJ, 333, 2-3.
22. Kristinsson, S. (2004) 'Databases and informed consent: Can broad consent legitimate research?', in G. Árnason, S. Nordal and V. Árnason (eds), Blood and Data: Ethical, Legal And Social Aspects of Human Genetic Databases (Iceland: University of Iceland Press), 111-120.
23. Lemmens, T. (1999) 'Private parties, public duties? The shifting role of insurance companies in the genetics era', in A.K. Thompson and R.F. Chadwick (eds), Genetic Information: Acquisition, Access, and Control (New York, Boston, Dordrecht, London, Moscow: Kluwer Academic /Plenum Publishers), 31-39.
24. Lipworth, W.R. and Kerridge, A.I. (2006) 'Consent in crisis: The need to reconceptualize consent to tissue banking research', Internal Medicine Journal, 36, 124-128.
25. Nõmper, A. (2005) Open Consent: A New Form of Informed Consent for Population Genetic Databases (Tartu: Tartu University Press).
26. Nõmper, A. (2007) 'Transforming principles of biolaw into national legislation: Some comparative notes regarding the law in Estonia', in M. Häyry, R. Chadwick, V. Árnason and G. Árnason (eds), The Ethics and Governance of Human Genetic Databases: European Perspectives (Cambridge: Cambridge University Press), 120-131.
27. O'Neill, O. (2001) 'Informed consent and genetic information', Studies in History and Philosophy of Biological and Biomedical Sciences, 32: 4, 689-704.
28. O'Neill, O. (2002) Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press).
29. O'Neill, O. (2003) 'Some limits of informed consent', Journal of Medical Ethics, 29, 4-7.
30. O'Neill, O. (2004) 'Informed consent and public health', Philosophical Transactions of the Royal Society: Biological Sciences, 359: 1447, 1133-1136.
31. Proctor, R.N. (1992) 'Genomics and eugenics: How fair is the comparison?', in G.J. Annas and S. Elias (eds), Gene Mapping: Using Law and Ethics as Guides (New York: Oxford University Press), 57-93.
32. Radetzki, M., Radetzki, M. and Juth, N. (2003) Genes and Insurance: Ethical, Legal and Economical Issues (Cambridge: Cambridge University Press).
33. Simm, K. (2005) 'Benefit-sharing: An inquiry regarding the meaning and limits of the concept in human genetic research', Genomics, Society and Policy, 1:2, 29-40.
34. Simm, K. (2007a) 'Benefit-sharing: A look at the history of an ethics concern', Nature Reviews Genetics, 8: 7, 496.
35. Simm, K. (2007b) 'Benefit-sharing and biobanks', in M. Häyry, R. Chadwick, V. Árnason and G. Árnason (eds), The Ethics and Governance of Human Genetic Databases: European Perspectives (Cambridge: Cambridge University Press), 159-169.
36. Sutrop, M. (2004a) 'Human genetic databases: Ethical, legal and social issues. Preface', Trames 8: 1-1, 5-12.
37. Sutrop, M. (2004b) 'Pharmacogenetics: Ethical issues', Bioethics, 18:4, III-VIII.
38. Sutrop, M. (2007) 'Trust', in M. Häyry, R. Chadwick, V. Árnason and G. Árnason (eds), The Ethics and Governance of Human Genetic Databases: European Perspectives (Cambridge: Cambridge University Press), 190-198.
39. Takala, T. (2004) 'Why we should not relax ethical rules in the age of genetics?', in G. Árnason, S. Nordal and V. Árnason (eds), Blood and Data: Ethical, Legal And Social Aspects of Human Genetic Databases (Iceland: University of Iceland Press), 135-140.
40. Thorgeirsdóttir, S. (2004) 'The controversy on consent in the Icelandic database case and narrow bioethics', in G. Árnason, S.s. Nordalnordal and V. Árnason (eds), Blood and Data: Ethical, Legal And Social Aspects of Human Genetic Databases (Iceland: University of Iceland Press), 67-77.