Consent and use of samples

Ethical Issues in Governing Biobanks: Global Perspectives

Volumn , Issue , 2013, Pages 57-88

  Elger, Bernice ^a  

^a UNIVERSITY OF GENEVA   (Switzerland)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84938063172     PISSN: None     EISSN: None     Source Type: Book    
DOI: None     Document Type: Chapter

References (20)

1. American Society of Human Genetics (1996), “ASHG report. Statement on Informed Consent for Genetic Research,” Am JHum Genet 59, 471–474.
2. Annas, G.J., Glantz, L.H. and Roche, P.A. (1995), “The Genetic Privacy act and Commentary, unpublished model law, February,” cited in Weir, R.F. (1999), “The ongoing debate about stored tissue samples, research, and informed consent,” Commissioned Paper in National Bioethics Advisory Commission (1999), Research involving Human Biological Materials: Ethical Issues and Policy Guidance, Report and Recommendations, vol. 2. Rockville; 1–21.
3. Annas, G.J., Glantz, L.H. and Roche, P.A. (1995), “Drafting the Genetic Privacy Act: science, policy, and practical considerations,” J Law Med Ethics 23: 360–366 [1995].
4. CCNE (Comite consultatifnational d’ethique) (1995), Opinion and Recommendations on “Genetics and medicine: from prediction to prevention.” Reports. No 46–30 October 1995 http://www.ccne-ethique.fr/english/start.htm accessed 9 July 2007.
5. COE (2006), Recommendation Rec(2006)4 of the Committee of Ministers to member states on research on biological materials of human origin (Strasbourg, France: Council of Europe).
6. Deschenes, M., Cardinal, G., Knoppers, B.M. and Glass, K.C. (2001), “Human genetic research, DNA banking and consent: a question of ‘form’?,” Clin Genet 59, 221–239.
7. Elger, B. and Caplan, A. (2006), “Consent and anonymization in research involving biobanks,” EMBO Reports 7, 661–666.
8. Elger, B. and Mauron, A. (2003), “A presumed-consent model for regulating informed consent of genetic research involving DNA banking,” in Populations and Genetics: Legal Socio-Ethical Perspectives, Knoppers B.M. (ed.) (Leiden/Boston: Martinus Nijhoff Publishers), pp 269–295.
9. European Society of Human Genetics (2003), “Data storage and DNA banking for biomedical research: technical, social and ethical issues. Recommendations of the European Society of Human Genetics,” European Journal of Human Genetics 11, Suppl. 2, 8–10.
10. Hoeyer, K., Olofsson, B.O., Mjorndal, T. and Lynoe, N. (2004), “Informed consent and biobanks: a population–based study of attitudes towards tissue donation for genetic research,” Scand JPublic Health 32, 224–229.
11. HUGO [Human Genome Organisation] Ethics Committee (1998), Statement on DNA Sampling: Control and Access: http://www.hugo-international.org/Statement_ on_DNA_Sampling.htm, accessed July 2007.
12. HUGO [Human Genome Organisation] Ethics Committee (2003), “Statement on Human Genomic Databases. December 2002,” Eubios Journal of Asian and International Bioethics 13, 99.
13. Kegley, J.A. (2004), “Challenges to informed consent,” EMBO Rep 5, 832–836.
14. Medical Research Council of Canada, Natural Sciences and Engineering Research Council of Canada and Social Sciences and Humanities Research Council of Canada, (1998), Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (Ottawa: Public Works and Government Services Canada).
15. NBAC (1999), Research involving Human Biological Materials: Ethical Issues and Policy Guidance, Report and Recommendations, vol. 1. (Rockville: National Bioethics Advisory Commission).
16. Network of Applied Genetic Medicine (RMGA) (Quebec, Canada). (2000), Statement of principles: Human genome research (version 2000). Network of Applied Genetic Medicine http://www.rmga.qc.ca, accessed August 2007.
17. UNESCO International Bioethics Committee (2003), International Declaration on Human Genetic Data (Paris, France: UNESCO).
18. Wendler, D. (2006), “One-time general consent for research on biological samples,” BMJ 332, 544–547.
19. WHO Human Genetics programme (1998), Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services (Report of a meeting on ethical issues in medical genetics Geneva 15–16 December 1997) (Geneva: World Health Organization).
20. World Health Organization (European Partnership on Patients’ Rights and Citizens’ Empowerment) (2003), Genetic Databases, Assessing the Benefits and the Impact on Human Rights and Patient Rights, Geneva: World Health Organization.