The services were poor and care providers discriminated against the sex workers
(Bandewar et al. 2010 : 4).
Since the research team established a clinic in the slums of Majengo, the qual-
ity of services has improved vastly. The sex workers now have non-discriminatory
access to full health care within walking distance. Since 2005, the women have
also been able to access a comprehensive care package, which includes antiret-
roviral treatments. This package has led to a marked reduction in morbidity and
mortality. At the same time, it has reduced the number of orphans and decreased
the number of HIV transmissions in the wider community.
In addition to these direct benefits in terms of health care, from the mid-1990s
the dedicated clinic environment has offered a 'safe haven', which has enabled the
women to share their experiences with one another in a respectful environment.
This has allowed them to form new relationships, social networks and a sense of
solidarity and belonging, creating a 'sex workers community'. This has helped
unite the sex workers in, for instance, a 'no condom, no sex services' campaign
(Bandewar et al. 2010 : 6).
In addition, international exposure as a result of the research publications has
brought an increased level of attention to the case that may eventually help safe-
guard the women's rights to any benefits that might accrue from the ongoing
research activities. In recent times their representatives have been invited as stake-
holders whenever Ministry of Health officials discuss the needs of most-at-risk
populations, thus moving to integrate their representation into formal consultations
and decision-making processes.
The increased engagement between the health care personnel and the sex work-
ers has also led to important insights for the researchers regarding the costs and
benefits of targeted HIV prevention interventions and which community engage-
ment exercises can be employed successfully. It has been demonstrated, against
expectations, that with the right motivation a highly disadvantaged and poor popu-
lation can cope with the demanding rigours of antiretroviral treatments and can
achieve the same adherence levels as the general population. This unforeseen out-
come of the research studies is of great significance - and benefit - to all those
living with, or working with those living with, HIV/AIDS, irrespective of the quest
for a successful vaccine.
5.3.5 Analysis of the Majengo Case
Traditionally, donors of samples used for scientific research do not have a direct
stake in future benefits. As previously noted, altruistic donation of samples is
frequently taken for granted. However, the traditional assumption that 'the
donors of genetic material used in research act altruistically and are entitled to
no property rights or direct benefit-sharing in the fruits of the research'
(Marchant 2005 : 153) is 'under assault from several directions simultaneously'
(Marchant 2005 : 159). In particular, this traditional handling of resource samples