Biology Reference
In-Depth Information
as the Economic and Social Research Council in Britain see monitoring as a mini-
mum ethics requirement. The council's Framework for Research Ethics includes
the following:
Procedures for institutional monitoring should be in place. Universities and other research
organisations should establish appropriate procedures to monitor the conduct of research
which has received ethics approval until it is completed, and to ensure appropriate con-
tinuing review where the research design anticipates possible changes over time that may
need to be addressed (ESRC 2012 : 5).
It would therefore be feasible for ethics review of a research project to con-
tinue up to the point at which it may be possible to determine whether vulner-
able research participants, especially in developing countries, have benefited from
taking part in research. To complement Chap. 7 , which recommended expanding
the provisions of the CBD to include access and benefit-sharing arrangements for
human biological resources, we will ask:
Could research ethics committees ensure compliance with post-study obligations (a form
of benefit sharing), in order to avoid burdening medical research with further governance
Before answering this question, it is worth revisiting and strengthening a claim
made earlier (see Chap. 2 ), namely that the developing world should be treated
differently from the developed world when it comes to the governance of human
biological resources. The alleged altruism shown by European DNA donors, for
instance, cannot be expected of donors from developing countries without perpetu-
ating exploitative relationships.
8.2 Benefit Sharing Versus the Altruism or Solidarity
For decades human tissue has been provided voluntarily by individuals for
research purposes, in most cases without any expectation of benefit. The case of
blood donation in the United Kingdom for blood transfusions and research pur-
poses is a case in point (Keown 1997 ). This altruism is also apparent among
research participants in developing countries. In interviews undertaken with sex
worker participants enrolled in long-term HIV/AIDS research in Majengo, Nairobi
(see Chap. 5 ), one respondent said:
On my faith … they can get a cure from my blood and it can help the whole world. So
that is why I gave myself. Even if I am infected…I am ready because I agreed to collabo-
rate in the research. 5
This respondent donated her blood to help the whole world. However, interna-
tional ethics guidelines (see Chap. 3 ) now require benefit sharing with research
5 Interview with Majengo participant in GenBenefit project, April 2007.
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