Biology Reference
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receive it on the basis of their need (risk), regardless of their involvement in the
research studies which brought it about. However, even if one were optimistic
about achieving compliance with the UNAIDS guideline, access to successfully
marketed products is not the only question on the topic of appropriate benefits.
The main problem is of a different nature: should the donors of biological samples
be able to negotiate for benefits on a case-by-case basis with the users of those
resources? If they did, would this not violate all guidelines on research ethics,
because the prospect of freely negotiated benefits would, in fact, present an undue
inducement to participate? This leads us to the next point.
5.3.5.2 Undue Inducement/Informed Consent
A common concern related to participation in medical research is whether offering
benefits to research participants is an inducement which threatens informed con-
sent (Grady 2001 ; Simm 2007 : 11-12). A senior Kenyan ethicist has noted that
'poverty is a great factor and sometimes militates against voluntary consent'. 29 As
we have observed above, some international guidelines accept that research partic-
ipants may receive free medical services, and even encourage the idea. However,
they also note that these should not be 'so extensive as to induce prospective sub-
jects to consent to participate in the research against their better judgment'
(CIOMS 2002 : guideline 7) and that '[b]enefits should not constitute improper
inducements to participate in research' (UNESCO 2005 : article 15).
Prostitution is a criminal offence in Kenya, and the age of consent is 18. The
UNAIDS guidance document notes clearly that '[p]ersons who engage in illegal
or socially stigmatized activities are vulnerable to undue influence' and argues that
legal or social status may limit a person's ability to provide valid informed consent
(UNAIDS 2000 : Guidance Point 13). The sex workers are known to be discrimi-
nated against in other health facilities, and this paradoxically compromises the
issue of informed consent in Majengo. Who would not enrol in a research study to
obtain free and non-discriminatory health care in a secure setting, given that there
is no alternative?
For the sex workers themselves, the prospect of free health care is clearly per-
ceived as a major benefit of participation in the studies: 'I agreed because when I am
sick they help me a lot and when my immunity is down they will also help me.' 30 '[I
agreed] because I did not have money to go to hospital so if they gave me medicine
… I thought it was better and my body can help other people by the research.' 31
This demonstrates that the provision of health care in return for research par-
ticipation can compound people's vulnerabilities (see Andanda and Cook Lucas
2007 ). The Majengo case illustrates that the tension between benefit sharing and
29 Interview with KEMRI Ethics Committee member, GenBenefit, Nairobi, April 2007.
30 See Footnote 27.
31 Ibid.
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