Biology Reference
In-Depth Information
study participants (Ballantyne 2008 : 190). As long as this paradox remains unre-
solved, ethics committees will not be in a position to decide definitively whether
the 'other benefits' in a given case constitute benefit sharing or an undue induce-
ment. This makes it extremely difficult for committees to play their governance
role successfully.
The authors of this chapter are continuing their research on the potential ten-
sion between benefit sharing for human genetic resources and undue inducement.
They are already satisfied, however, that it is possible to provide benefit sharing
while avoiding undue inducement. The commodification of the body can indeed
open up further opportunities for exploitation, especially in developing coun-
tries. An example would be paid surrogate pregnancy, when Indian mothers, for
instance, carry babies for affluent mothers in the North (Taneja 2008 ). But such
commodification can be avoided by prohibiting one-to-one financial gain from a
research transaction. If individual donors for DNA were given no cash except for
legitimate expenses, the risk of undue inducement would be much reduced.
What, then, might legitimate benefit sharing that avoids undue inducement look
like? Here it is important to look at two of the main reasons for legislating against
undue inducement (see Chap. 2 ): namely, that research participants might accept a
risk (usually to their health) that would not otherwise be acceptable, and that they
would then participate in research against their better judgement.
It has already been noted that the donation of human genetic resources carries
minimal risk and imposes a minimal burden. 9 Hence, the foundation of the undue
inducement principle does not apply to access to genetic resources in the same
way as it applies to enrolling in Phase I clinical trials. If risk reduction can only be
achieved by restricting benefits to research participants (as, for instance, in bur-
densome, risky trials involving healthy volunteers), minimal risk studies can con-
centrate more on benefit sharing than misplaced concerns about undue
inducement. Access to health care for research participants and their local commu-
nities is therefore the ideal benefit to be shared with the donors of human biologi-
cal resources. Through such benefit sharing, they would come one step closer to
the fair exchange model that exists between medical researchers in the North and
their research participants. Global research without borders would then contribute
to global justice without borders when it comes to access to health care. At least
some additional access to health care, some new health care facilities and some
health care training and education could be achieved this way.
At the same time, it is essential to note that benefit sharing cannot resolve deep-
seated issues of distributive injustice or human rights issues that render national
governments unable to respect, protect, and fulfil the human right to access to
health care. For this reason, we shall present in Chap. 9 an example of a reform
plan that provides a way forward for increasing the availability of life-saving med-
icines for the poor, with the potential to close the health care gap between develop-
ing and developed countries.
9 Some exceptions, as outlined in Chap. 2 , would have to be dealt with separately, for instance
where blood might have sacred meaning.
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