Biology Reference
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a suitable benefit). Answers must also cover a myriad of cases ranging from, say, a
Swiss patient who allows a blood sample taken for necessary diagnostic tests also
to be used for genetic research, to a Kalahari bushman whose one-off mouth swab
is used for scholarly research into ancestry tracing, and to large populations of
donors who take part over many years in a genetic research programme in which
their genetic profile is linked to their health profile.
For all donors whose human right to health is secured through comprehen-
sive, well-funded national health services, we firmly support the solidarity or
altruism model in the governance of human biological resources. Contributing
voluntarily to medical research through an act that presents minimum risk
and minimum burden when the individual donor and/or the donor's com-
munity is likely to benefit from the research outcomes does not warrant
additional benefit-sharing arrangements . Access to ever-expanding collec-
tively funded possibilities to secure physical and mental health is a sufficient
return for sample donation. In affluent settings, we therefore do not recom-
mend 'alternative benefits' for sample donation, apart from feedback on the
research project.
But only a minority of the seven billion people living today are in the fortunate
position of having their health care needs met through communally funded sys-
tems such as national health services. When those who are less fortunate take part
in medical research that is unlikely to benefit them directly, exploitation can occur.
It is this exploitation that benefit sharing tries to avoid.
However, not all research conducted in developing countries and funded
by affluent nations is exploitative or warrants benefit sharing. For instance,
a charity may fund genetic research into tuberculosis with the aim of developing
cheaper, more effective, shorter-term treatments. If successful, this research could
be highly beneficial for a developing country. As long as any resulting product is
marketed within the donors' country at an affordable price, the solidarity or
altruism model is applicable, and alternative forms of individual benefit shar-
ing are unnecessary.
The scenario of locally relevant research funded publicly or through a char-
ity stands in marked contrast to the Indonesian case discussed in Chap. 5 . The
Indonesian government noted that Indonesian samples were being used to develop
a product to benefit, almost exclusively, citizens in affluent nations. When such
asymmetry between contribution and benefit occurs, benefit sharing is necessary.
But what alternative benefits are appropriate in such cases? We turn to process rec-
ommendations below, focusing on gender issues, but we begin with substantive
It is important to distinguish between benefits for research participants and ben-
efits for the host community. Below we refer to one policy option, CBD expan-
sion, which could improve the handling of host community benefits. However, this
topic has focused on research participants, so let us irst look at beneits suitable
for them.
One of the cases discussed in this topic, that of the Majengo sex workers in
Kenya, does offer an example of alternative benefits. The main benefit the sex
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