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Benefit-sharing, Biobanks and Vulnerable Populations

  • Agomoni Ganguli-Mitra
Conference paper
  • 641 Downloads
Part of the Veröffentlichungen des Instituts für Deutsches, Europäisches und Internationales Medizinrecht, Gesundheitsrecht und Bioethik der Universitäten Heidelberg und Mannheim book series (IMGB, volume 33)

Abstract

With the rapid development of tools for DNA extraction, there has been a notable increase in the establishment of small and large biobanks for the purpose of research. Combined with highly efficient methods for DNA analysis, biobanks provide a large scale tool for biomedical research. As biobanks continue to be established worldwide, new and recurring ethical issues are put forward in the international arena. One such topic is benefit-sharing, which offers ways to address, on a small scale, existing global inequities, especially those related to the benefits and burdens of medical research. This paper attempts to raise some of the concerns related to the development of benefit-sharing frameworks, particularly in the context of vulnerable populations, who typically suffer from the inequities that benefit-sharing intends to address. The discussion is based implicitly and explicitly on the following five questions: Who are the vulnerable? How can benefitsharing be justified? What exactly should be shared? When is benefit-sharing appropriate? Why are certain benefit-sharing schemes being offered?

Emphasis is put on the importance of the context in which benefits are shared. Furthermore, obstacles and complexities of benefit-sharing are illustrated with regard to the findings of a qualitative study. The paper concludes by looking at biobanks in connection with global justice in the field of health research.

Keywords

Intellectual Property Vulnerable Population Genomic Research Global Justice Vulnerable Person 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

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Literatur

  1. Benatar S (2007) New perspectives on international research ethics. In: Häyry M, Takala T, Herissone-Kelly P (eds) Ethics in Biomedical Research. Rodopi, Amsterdam/New YorkGoogle Scholar
  2. Berg K (2001) The ethics of benefit-sharing. Clin Gen 59: 240-243Google Scholar
  3. Collins FS (2004) The case for a US prospective cohort study of genes and environment. Nature 429: 475-477Google Scholar
  4. Collins FS, McKusick VA (2001) Implications of the Human Genome Project for Medical Science. JAMA 285: 540-544Google Scholar
  5. Council for International Organizations of Medical Sciences [CIOMS] (2002) International Ethical Guidelines for Biomedical Research Involving Human Subjects. www.cioms.ch/frame_guidelines_nov_2002.htm. Accessed 10 September 2007Google Scholar
  6. Denny CC, Grady C (2007) Clinical research with economically disadvantaged populations. J Med Ethics 33: 382-385Google Scholar
  7. Dickenson D (2004) Consent, commodification and benefit-sharing in genetic research. Dev World Bioeth 4: 109-123Google Scholar
  8. Elger B, Biller-Andorno N, Mauron A, Capron AM (2008) Ethical and Regulatory Aspects of Human Genetic Databases. Ashgate, Aldershot (in press)Google Scholar
  9. Ganguli-Mitra A (2008) Benefit-sharing and remuneration. In: Elger B et al (eds) Ethical and Regulatory Aspects of Human Genetic Databases. Ashgate, Aldershot (in press)Google Scholar
  10. Global Forum for Health Research [GFHR] (2002) The 10/90 Report on Health Research 2001-2002.Google Scholar
  11. Harris J (2005) Scientific research is a moral duty. J Med Ethics 31: 242-248Google Scholar
  12. HUGO Ethics Committee (2000) Statement on Benefit-Sharing. www.hugo-international.org/PDFs/benefit.html. Accessed 10 September 2007Google Scholar
  13. Juengst ET (1998) Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous, and Practically Useless. Kennedy Inst Ethics J 8: 183-200Google Scholar
  14. Kaiser J (2002) Population Database Boom, From Iceland to the U.S. Science 298: 1158-1161Google Scholar
  15. Knoppers BM, Fecteau C (2003) Human Genomic Databases: A Global Public Good? Eur J Health Law 10: 27-41Google Scholar
  16. Macklin R (2003) Bioethics, vulnerability and protection. Bioethics 17: 473-486Google Scholar
  17. Macklin R (2004) Double Standards in Medical Research in Developing Countries. Cambridge University Press, CambridgeGoogle Scholar
  18. National Bioethics Advisory Commission [NBAC] (2001) Ethical and Policy Issues in Research Involving Human Participants. Vol. I. Report and Recommendations of the National Bioethics Advisory Commission. NBCA, BethesdaGoogle Scholar
  19. Participants in the 2001 Conference on Ethical Aspects of Research in Developing Countries [Participants] (2002) Fair Benefits for Research in Developing Countries. Science 298: 2133-2134Google Scholar
  20. Pullman D, Latus A (2003) Clinical trials, genetic add-ons, and the question of benefit-sharing. Lancet 362: 242-244Google Scholar
  21. Simm K (2007) Benefit-Sharing and Biobanks. In: Häyry M, Chadwick R, Árnason V, Árnason G (eds) The Ethics and Governance of Human Genetic Databases: European Perspectives. Cambridge University Press, CambridgeGoogle Scholar
  22. Schroeder D et al (2005) Sharing the benefits of genetic research. BMJ 331: 1351-1352Google Scholar
  23. Schüklenk U, Kleinschmidt A (2006) North-South benefit sharing arrangements in bioprospecting and generic research: a critical ethical and legal analysis. Dev World Bioeth 6: 122-134Google Scholar
  24. Schulz-Baldes A, Vayena E, Biller-Andorno N (2007) Sharing benefits in international health research. EMBO Rep 8: 8-13Google Scholar
  25. United Nations Educational, Scientific and Cultural Organization (UNESCO) (2003) International Declaration on Human Genetic Data. http://portal.unesco.org/en/ev.php-URL_ID=17720&URL_DO=DO_TOPIC&URL_SECTION=201.html. Accessed 10 September 2007Google Scholar
  26. World Health Organization (WHO) (2002) Genomics and World Health. Report of the Advisory Committee on Health Research. WHO, GenevaGoogle Scholar
  27. www.globalforumhealth.org/filesupld/1090_report_01-02/01_02_front_matt.pdf. Accessed 10 September 2007Google Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2012

Authors and Affiliations

  • Agomoni Ganguli-Mitra
    • 1
  1. 1.Institute of Biomedical EthicsUniversity of ZurichZurichSwitzerland

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