Withdrawing from participating in a biobank - A comparative study

European Journal of Health Law

Volumn 15, Issue 4, 2008, Pages 381-389

  Gertz, Renate ^a  

^a UNIVERSITY OF EDINBURGH   (United Kingdom)

Author keywords

Autonomy; Biobanks; Data; Samples; Withdrawing

Indexed keywords

COMPARATIVE STUDY; FREEDOM; HUMAN; MEDICAL RESEARCH; MEDICOLEGAL ASPECT; PATIENT AUTONOMY; PATIENT RIGHT; REVIEW; ARTICLE; ETHICS; FACTUAL DATABASE; INFORMED CONSENT; MEDICAL RECORD; PERSONAL AUTONOMY; PRACTICE GUIDELINE; PRIVACY; REFUSAL TO PARTICIPATE; STANDARD;

DATABASES, FACTUAL; GUIDELINES AS TOPIC; HUMANS; INFORMED CONSENT; MEDICAL RECORDS SYSTEMS, COMPUTERIZED; PERSONAL AUTONOMY; PRIVACY; REFUSAL TO PARTICIPATE;

EID: 62449195429     PISSN: 09290273     EISSN: 15718093     Source Type: Journal    
DOI: 10.1163/157180908X338269     Document Type: Review

References (29)

1. This article is part of a larger-scale project and a series of papers, examining the governance of biobanks in its entirety and taking into consideration all aspects, from recruitment through to withdrawal from the study.
2. A. Cambon-Thomsen, "The Social and Ethical Issues of Post-Genomic Human Biobanks" Nature Reviews Genetics, No. 5, 2004, 866.
3. Council of Europe, Recommendation Rec(2006)4, Article 15.
4. A. Cambon-T omsen, op. cit.
5. While the plan of an Icelandic Health Sector Database in its original form has been abandoned, the databank will still be used as an example, as it was one of the first, most ambitious and most controversial concepts.
6. As at the time of writing.
7. http://www.propeur.bham.ac.uk/fi nalconference.htm.
8. http://www.propeur.bham.ac.uk/workshopreports/Final-Conference-Report.pdf p. 4.
9. Ibid.
10. O. O'Neill, Autonomy and Trust in Bioethics, (Cambridge, Cambridge University Press, 2002), p. 21-22.
11. G. Helgesson and L. Johnsson, "The Right to Withdraw Consent to Research on Biobank Samples" Medicine, Health Care and Philosophy, No. 8, 2005, 319.
12. M.G. Hansson et al., "Should Donors Be Allowed to Give Broad Consent to Future Biobank Research?" The Lancet Oncology, No. 7:3, 2006, 266-269.
13. http://portal.unesco.org/en/ev.php-URL-ID=17720&URL-DO= DO-TOPIC&URL-SECTION=201.html.
14. Nationaler Ethikrat, Biobanks for Research, Opinion, Berlin, Nationaler Ethikrat, 2004.
15. Personal communication with Professor Ian Ford, Department of Statistics, Glasgow University.
16. Code of Federal Regulations, Title 45, Public Welfare, Department of Health and Human Services, Part 46 Protection of Human Subjects, 46.116.
17. See for example D. Winickoff, "Biosamples, Genomics, and Human Rights: Context and Content of Iceland's Biobanks Act" Journal of BioLaw and Business, No.4, 2000;
18. J.F. Merz, G.E. McGee and P. Sankar, "'Iceland Inc.'?: On the Ethics of Commercial Population Genomics" Social Science & Medicine, 2004;
19. M. Fortun, "Breaking the Code" Rensselaer Mag, 2001.
20. .
21. .
22. .
23. H. Rose, The Commodifi cation of Bioinformation: The Icelandic Health Sector Database, Wellcome Trust, 2001, p. 12.
24. Ibid.
25. Ibid., p. 24.
26. J.A. Robertson, "Precommitment Issues in Bioethics" Texas Law Review, No. 81, 2003, 1849.
27. Ibid.
28. See J. Elster, Ulysses Unbound: Studies in Rationality, Precommitment, and Constraints, (Cambridge, Cambridge University Press, 2000).