Access and use of human tissues from the developing world: Ethical challenges and a way forward using a tissue trust

BMC Medical Ethics

Volumn 12, Issue 1, 2011, Pages

  Emerson, Claudia I ^a   Singer, Peter A ^a   Upshur, Ross E G ^b,c  

^a UNIVERSITY HEALTH NETWORK   (Canada)

^b at the University of Toronto Wagner is also a faculty member of the Canadian Medical Associations' Physician Management Institute   (Canada)

^c UNIVERSITY OF TORONTO   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; DEVELOPING COUNTRY; ETHICS; HEALTH CARE FACILITY; HUMAN; INFORMED CONSENT; MEDICAL RESEARCH; PARTICIPATORY RESEARCH; TRUST;

BIOMEDICAL RESEARCH; COMMUNITY-BASED PARTICIPATORY RESEARCH; DEVELOPING COUNTRIES; HUMANS; INFORMED CONSENT; TISSUE BANKS; TRUST;

EID: 78951492618     PISSN: None     EISSN: 14726939     Source Type: Journal    
DOI: 10.1186/1472-6939-12-2     Document Type: Review

References (21)

1. Upshur REG, Lavery JV, Tindana PO: Taking tissue seriously means taking communities seriously. BMC Medical Ethics 2007, 8:11.
2. Rohter L: In the Amazon, Giving Blood but Getting Nothing. The New York Times; 2007.
3. Thambisetty S: 2002 [http://www.iprcommission.org/papers/pdfs/study- papers/10-human-genome-patents.pdf], Accessed 28 September 2009.
4. MacIntosh C: Indigenous Self-Determination and Research on Human Genetic Material: A Consideration of the Relevance of Debates on Patents and Informed Consent, and Political Demands on Researchers. Health Law Journal 2005, 13:213-251.
5. Dickenson D: Human Tissue and Global Ethics. Genomics, Society and Policy 2005, 1(1):41-53.
6. Tangwa GB: Research with vulnerable human beings. Acta Trop 2009, 112(Suppl 1):S16-S20.
7. International Herald Tribune: Indonesia refuses to share bird flu samples with WHO without legally binding agreement. 2007.
8. Séguin B, Hardy BJ, Singer PA, Daar AS: Genomics, public health and developing countries: the case of the Mexican National Institute of Genomic Medicine (INMEGEN). Nat Rev Gen 2008, , supplement: S5-S9.
9. Andanda PA: Human-tissue-related inventions: ownership and intellectual property rights in international collaborative research in developing countries. J Med Ethics 2008, 34:171-179.
10. O'Neill O: Autonomy and Trust in Bioethics Cambridge: Cambridge University Press; 2002.
11. Lavery JV, Grady C, Wahl ER, Emanuel EJ, (Ed): Ethical issues in international biomedical research: A casebook. New York: Oxford University Press; 2007.
12. Tindana PO, Singh JA, Tracy CS, Upshur REG, Daar AS, Singer PA, Frohlich J, Lavery JV: Grand Challenges in Global Health: Community Engagement in the Research in Developing Countries. PLoS Med 2007, 4(9):e273.
13. Lavery JV, Tindana PO, Scott TW, Harrington LC, Ramsey JM, Ytuarte-Nunez C, James AA: Towards a framework for community engagement in global health research. Trends Parasitol 2010, 26(6):279-283.
14. Slevin KW, Ukpong M, Heise L: Community Engagement in HIV Prevention Trials: Evolution of the Field and Opportunities for Growth. Aids2031 Working Paper no. 11; 2008 [http://www.aids2031.org/working-groups/science-and- technology?view=papers], Accessed 5 August 2009.
15. Hayden C: Taking as Giving: Bioscience, Exchange and the Politics of Benefit-sharing. Soc Stud Sci 2007, 37(5):729-758.
16. Sheremeta L, Knoppers BM: Beyond the Rhetoric: Population Genetics and Benefit-Sharing. In Accessing and Sharing the Benefits of the Genomics Revolution. Edited by: Philips PWB, Onwuekwe CB. Dordrecht Springer; 2007.
17. Mfutso-Benjo J, Masive F, Molyneux M, Ndebele P, Chilungo A: Why do people refuse to take part in biomedical research studies? Evidence from a resource-poor area. Malawi Med J 2008, 20(2):57-63.
18. Thorsteinsdóttir H, Daar AS, Smith RD, Singer PA: Genomics - a global public good? Lancet 2003, 361(9361):891-892.
19. Human Genome Organization Ethics Committee Statement on Benefit Sharing. [http://www.hugo-international.org/img/benefit-sharing-2000.pdf], Accessed 5 August 2009.
20. Winickoff DE, Winickoff RN: The Charitable Trust as a Model for Genomic Biobanks. NEJM 2003, 349(12):1180-1184. (Pubitemid 37122332)
21. Benatar SR, Singer PA: A new look at international research ethics. BMJ 2000, 321:824-826.