Skip to main content

Donating Human Samples: Who Benefits? Cases from Iceland, Kenya and Indonesia

Abstract

Benefit sharing involving human genetic resources is an unresolved topic. Some argue that participation in scientific research should always be altruistically motivated, which is how access to human genetic resources has historically been governed in affluent nations. However, uncritically transferring the altruism model to developing countries leads to the emergence of serious exploitation issues. This chapter illustrates the potential for exploitation and other associated ethical concerns through a discussion of three cases: The Icelandic deCODE biobank for genetic research; the sex workers from Nairobi, Kenya, whose samples are used for ongoing HIV/AIDS research; and the Indonesian government’s decision to withhold virus samples from the World Health Organization in order to achieve fairer benefit sharing. Public attention is captured more easily by global pandemics, but the case of the Nairobi sex workers illustrates that the exploitation issues raised on the international stage by the Indonesian government are not limited to virus sharing. A framework for equitable access to human genetic resources is urgently needed, but in order to ensure justice, this needs to be accompanied by sustained attention to benefit sharing.

Keywords

  • Benefit sharing
  • Icelandic biobank
  • Majengo sex workers
  • Indonesian virus samples
  • Exploitation
  • Human genetic resources
  • HIV/AIDS

This is a preview of subscription content, access via your institution.

Buying options

Chapter
USD   29.95
Price excludes VAT (USA)
  • DOI: 10.1007/978-94-007-6205-3_5
  • Chapter length: 33 pages
  • Instant PDF download
  • Readable on all devices
  • Own it forever
  • Exclusive offer for individuals only
  • Tax calculation will be finalised during checkout
eBook
USD   139.00
Price excludes VAT (USA)
  • ISBN: 978-94-007-6205-3
  • Instant PDF download
  • Readable on all devices
  • Own it forever
  • Exclusive offer for individuals only
  • Tax calculation will be finalised during checkout
Softcover Book
USD   179.99
Price excludes VAT (USA)
Hardcover Book
USD   179.99
Price excludes VAT (USA)

Notes

  1. 1.

    For example, the UK Biobank, a research project which collects health, medical and lifestyle information from large numbers of people, together with blood, saliva and urine samples in order to track participants’ long term health, states in its information letter to potential participants, ‘Taking part is not intended to help you directly, but it should give future generations a much better chance of living their lives free of diseases that disable and kill.’ http://www.ukbiobank.ac.uk/docs/participantinviteletter.pdf.

  2. 2.

    For a further discussion of the homogeneity of the Icelandic population, see Árnason (2004).

  3. 3.

    Mannvernd means literally ‘human protection’. Although Mannvernd calls itself, in its full name, the ‘Association of Icelanders for Ethics in Science and Medicine’, it is specifically the ‘organized opposition to the Icelandic government’s Act on a Health Sector Database’, according to its website (http://www.mannvernd.is). Its members are primarily medical doctors, scientists and academics. Mannvernd and its individual members were highly active and visible during the parliamentary debates on the Health Sector Database Act in 1998 and, to a lesser extent, during the following three or four years, as the association encouraged people to opt out of the database.

  4. 4.

    ‘Samkomulag á milli heilbrigðis- og tryggingamálaráðherra og Íslenskrar erfðagreiningar ehf. í tengslum við útgáfu rekstrarleyfis til gerðar og starfrækslu gagnagrunns á heilbrgiðissviði’ [Agreement between the Minister of Health and Insurance and Íslensk erfðagreining (deCODE) in relation to a licence to operate a health sector database], signed 21 January 2000 by the Minister of Health, Ingibjörg Pálmadóttir, and Kári Stefánsson, CEO of deCODE genetics Inc. Available (in Icelandic only) at http://www.mbl.is/serefni/decode/ (see articles 4 and 6).

  5. 5.

    It decided in the case of Gudmundsdóttir v. the State of Iceland (No. 151/2003), that the daughter of a deceased man could prevent his health information from being entered into the Health Sector Database. For a good analysis of the judgment, see Gertz (2004).

  6. 6.

    Apparently deCODE only received US$74.3 million out of the expected US$200 million (see Sigurdsson 2003).

  7. 7.

    For example: ‘In all cases, the prior, free and informed consent of the person concerned shall be obtained. If the latter is not in a position to consent, consent or authorization shall be obtained in the manner prescribed by law, guided by the person’s best interest’ (UNESCO 1997: article 5(b)).

  8. 8.

    ‘Benefits from advances in biology, genetics and medicine, concerning the human genome, shall be made available to all, with due regard for the dignity and human rights of each individual’ (UNESCO 1997: article 12(a)). ‘[D]eveloping countries [should] benefit from the achievements of scientific and technological research so that their use in favour of economic and social progress can be to the benefit of all’ (UNESCO 1997: article 19(a)(iii)).

  9. 9.

    UNESCO (2005), article 15, specifies examples of sharing benefits of scientific research in general.

  10. 10.

    For a general discussion on this issue, see Andanda (2005).

  11. 11.

    For a detailed discussion, see Jóhannesson (1999).

  12. 12.

    See Andanda (2009) for a discussion of the women’s vulnerability.

  13. 13.

    Interview with University of Nairobi researcher, GenBenefit, April 2007.

  14. 14.

    The interviews quoted in this chapter were conducted as part of the GenBenefit project. Clearance was granted by the University of the Witwatersrand’s Human Research Ethics Committee (Non-medical), Protocol Number 61110, and the Kenya Medical Research Institute’s National Ethical Review Committee, reference number KEMRI/RES/7/3/1.

  15. 15.

    This phenomenon was first described by Plummer at an international AIDS conference in Berlin in 1993 (Altman 1993).

  16. 16.

    The cohort of female sex workers was established by Elizabeth Ngugi and colleagues from the University of Nairobi and the University of Manitoba (see Jeffreys 2001).

  17. 17.

    Interview with a University of Nairobi researcher, GenBenefit, April 2007.

  18. 18.

    Founded in 1996, the International AIDS Vaccine Initiative (IAVI) is a global not-for-profit, public-private partnership, with a mission to ensure the development of preventive AIDS vaccines that are not only safe and effective, but also accessible to all people http://www.iavi.org/Pages/home.aspx.

  19. 19.

    Phase I trials are the earliest human tests in the life of a new drug. They involve few people and check for safety, side effects and efficacy. This information is used to establish the dose which will be used in the next stage of testing. Phase II trials are carried out in larger groups of volunteers, to establish more about efficacy, dosage and side effects.

  20. 20.

    Initial analysis showed that although the vaccine was safe and well tolerated, only 20% of the volunteer participants had shown a potentially protective stimulated T-cell response after receiving the vaccine, and even that response was at a lower rate than desired (Okwemba 2004; Waldholz 2004).

  21. 21.

    After initial exposure to any agent, it takes time for antibodies to develop. At some point after initial HIV infection, seroconversion occurs. (Usually this takes a few weeks to a few months.) This means there is now a detectable level of antibodies to HIV in the blood, and a person will test (sero)positive for HIV.

  22. 22.

    For example: ‘This study adds IRF-1, a transcriptional immunoregulatory gene, to the list of genetic correlates of altered susceptibility to HIV-1. This is the first report suggesting that a viral transcriptional regulator might contribute to resistance to HIV-1’ (Ball et al. 2007: 1091).

  23. 23.

    Issues have been raised concerning the difficulties of communicating adequate information for obtaining meaningful consent from potential participants, given the difficulties of translating complex concepts into languages that may not (yet) have the linguistic resources to communicate those. ‘[T]he moment you begin to talk about even translating into a language that the subject, the participant understands, you find that most words do not exist here … so there is a problem of the concepts’ (interview with Kenya Medical Research Institute (KEMRI) Ethics Committee member, GenBenefit, Nairobi, April 2007).

  24. 24.

    Interview with an official at the Ministry of Health (MoH), Kenya, GenBenefit, April 2007.

  25. 25.

    This was confirmed by a University of Nairobi researcher, as well as some of the Majengo participants. It is important to note that this has been a major factor in the women’s (continuing) involvement: ‘I expected treatment, free of charge. Every time I fall sick I come here for treatment and it’s free.’; ‘It is their treatment, they give us free medicine because of the nature of our work’ (GenBenefit interviews, Nairobi, April 2007).

  26. 26.

    Details came to public attention through the media, where an alleged patent dispute between the Universities of Nairobi and Oxford was first discussed in 2000 (Turner 2000). It was reported that disagreements arose when University of Nairobi scientists protested that their partners at Oxford had patented the HIV vaccine development process without acknowledging them (Daily Nation 2001). This dispute was resolved after ‘intense’ negotiations (Turner 2000) which resulted in a new memorandum of understanding between the parties. The 30-page memorandum was in force from 1 October 2001 to 30 September 2004. Although it provides that the collaborators will be joint applicants for, and owners of, rights, titles and interests in inventions and/or patents arising from the research, and that research benefits will be shared equally between them, it does not mention how the researchers would compensate the Majengo women who provided so many of the resources leading to the vaccine development (AAVP 2002).

  27. 27.

    Interviews with Majengo participants, GenBenefit, Nairobi, April 2007.

  28. 28.

    Some of the sex workers have pointed out that benefit sharing via national governments would be complicated by the fact that some of them are migrants from Tanzania or Uganda. Additional questions around benefits for the families of deceased participants have also been raised by several parties (see GenBenefit 2009).

  29. 29.

    Interview with KEMRI Ethics Committee member, GenBenefit, Nairobi, April 2007.

  30. 30.

    See Footnote 27.

  31. 31.

    Ibid.

  32. 32.

    See Footnote 29.

  33. 33.

    Ibid.

  34. 34.

    ‘Material transfer’ here refers to the transfer of materials or specimens to another party.

  35. 35.

    http://www.who.or.id/avian/index.php

  36. 36.

    As of August 2010 there had been 139 deaths recorded in Indonesia out of a total 168 cases (http://www.who.int/csr/disease/avian_influenza/country/cases_table_2010_08_31/en/index.html).

  37. 37.

    See Footnote 35.

  38. 38.

    http://www.who.int/csr/disease/avian_influenza/country/cases_table_2011_06_3/en/index.html

  39. 39.

    http://www.who.int/csr/disease/avian_influenza/country/en/

  40. 40.

    An SMTA is a legal contract that governs the transfer of materials – typically biological materials – between two parties. An SMTA specifies the rights and obligations of provider and recipient, binding both to certain terms and conditions of transfer.

  41. 41.

    The IHR in their current version, which came into force on 15 June 2007, are legally binding on 194 countries.

References

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Julie Cook Lucas .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and Permissions

Copyright information

© 2013 Springer Science+Business Media Dordrecht

About this chapter

Cite this chapter

Lucas, J.C. et al. (2013). Donating Human Samples: Who Benefits? Cases from Iceland, Kenya and Indonesia . In: Schroeder, D., Cook Lucas, J. (eds) Benefit Sharing. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-6205-3_5

Download citation