Abstract
The donors of human genetic resources deserve benefits in return for their contribution to scientific research. In the context of developing countries this claim holds as a matter of justice. But how can this demand be realised and implemented? This chapter looks at the role of ethics review as a possible benefit sharing mechanism. In particular the promising role of research ethics committees in monitoring the Declaration of Helsinki‘s post-study obligations is considered. However, a range of obstacles are identified, which would have to be overcome before ethics review could reliably achieve justice for the donors of human genetic resources in developing countries. These issues are addressed in specific recommendations. The chapter concludes that the provision of health care, however extensive, in return for the donation of human genetic resources does not represent undue inducement, but rather fair benefit sharing.
A shorter version of this chapter was published in 2012 by Doris Schroeder and Eugenijus Gefenas as: Realising benefit sharing: The case of post-study obligations, Bioethics, 26(6).
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Notes
- 1.
Three exceptions at the time of writing are Andorra, Holy See (Vatican) and South Sudan.
- 2.
By human biological resources, we mean human biological samples collected for genetic studies and related data.
- 3.
- 4.
The Nuremberg Code of 1949 is a set of principles and rules to be observed when undertaking research with human participants. It was developed after the Nuremberg trials in 1946 and 1947 of Nazi doctors who had committed atrocities against concentration camp internees as part of medical research. It was superseded by the Declaration of Helsinki in 1964 (see Chap. 3).
- 5.
Interview with Majengo participant in GenBenefit project, April 2007.
- 6.
See the partnership’s website at http://www.edctp.org.
- 7.
Of course, one could argue that comprehensive health care during a study offers too little in terms of benefit sharing. However, where comprehensive health care is offered to study participants and their families, sometimes for decades, as is the case with some Nairobi sex workers, the fair exchange model available to donors from affluent countries is being approximated.
- 8.
Interviews with Majengo research participants, GenBenefit, April 2007.
- 9.
Some exceptions, as outlined in Chap. 2, would have to be dealt with separately, for instance where blood might have sacred meaning.
- 10.
Type III diseases are those that occur exclusively or overwhelmingly in poor countries.
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Schroeder, D., Gefenas, E., Chennells, R., Fournier, V., Feinholz, D., Sirugo, G. (2013). Realizing Benefit Sharing: Is There a Role for Ethics Review?. In: Schroeder, D., Cook Lucas, J. (eds) Benefit Sharing. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-6205-3_8
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