Biology Reference
In-Depth Information
• Feedback to participants (Declaration of Helsinki) (WMA 2008 : article 33)
• Access to health care for participants to ensure the safe conduct of research and
adherence to post-study obligations (CIOMS 2002 : guideline 21)
• Support for local health services, including health infrastructure (HUGO Ethics
Committee 2000b )
• Access to scientiic and technological knowledge (Universal Declaration on
Bioethics and Human Rights) (UNESCO 2005 : article 2f, 15e)
• Capacity-building facilities for research purposes (Universal Declaration on
Bioethics and Human Rights) (UNESCO 2005 : article 15f, 24.2).
The sex workers do benefit from feedback and the provision of health care, as
well as health education campaigns and the availability of a functioning health infra-
structure. But who decides whether this is appropriate, or enough? Some of the
Majengo women have a very clear sense of what additional benefits there should be.
Unsurprisingly, many of the sex workers want to leave their dangerous profession.
During our research a young sex worker asked: 'Is there any way you can help us to
fend for ourselves and get on in life like others? That would be good.' 27 Over the
past 15 years the clinic has made efforts to help some leave sex work. However,
these initiatives have not been successful, due to inadequate business skills, the poor
state of the economy in Kenya and lack of experience: 'We are doctors and poorly
equipped to help effect transition for sex workers into other trades.' [Joshua Kimani].
Interestingly, one of the most serious problems in decision-making for CBD-
style benefit sharing in non-human genetics (as discussed in Chap. 4 ), - namely,
who can legitimately represent a community - would not be as problematic in
urban Majengo. As an outcome of the long-standing research study, the sex work-
ers regularly elect peer leaders who have represented their interests in discussions
with the clinic management and researchers, and more recently in consultations
with government agencies.
More broadly, though, there are important questions about who should be
included in the group that qualifies for these benefits. The sex workers enrolled in
the study? Sex workers in the Majengo slum in general? Sex workers in Kenya?
The whole Majengo community? The entire nation? 28
When trying to resolve issues of representation and appropriate benefits for this
case, we have to conduct our discussion in the wider context of benefit sharing
as established by relevant ethical guidelines. For instance, the UNAIDS guidance
document recommends that any successful HIV vaccine should be made available
not only to clinical trial participants but also to 'other populations at high risk of
HIV infection' (UNAIDS 2000 : 13). As Majengo sex workers undoubtedly consti-
tute such a group, this means that if a vaccine were developed, the women should
27 Interviews with Majengo participants, GenBenefit, Nairobi, April 2007.
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 sev-
eral parties (see GenBenefit 2009 ).
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