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and indeed much more likely to occur, when the research participants are
vulner-
able
. To correct the injustice, and thereby to prevent exploitation and protect the
vulnerable,
benefit sharing
is required. Benefits must be shared with the research
participants, if they would otherwise have no access to the products resulting from
the research, or, in our case, if they lack access to health care. There is a worry,
although we have argued that it is a misplaced worry, that such benefits may con-
stitute
undue inducements
to participate in such research. This is how the concepts
of vulnerability, exploitation, benefit sharing and undue inducements are related in
the context of research involving human participants in developing countries.
The concepts of vulnerability and exploitation are both vague and morally
charged. We should be careful about their use. We have suggested a relatively
precise definition of 'vulnerability' in the hope of both clarifying the concept and
avoiding its over-extension, which we have observed in recent years. According to
our definition, to be vulnerable means to face a significant probability of incurring
an identifiable harm, while substantially lacking the ability or means to protect one-
self. When we talk about vulnerable research participants we need to be clear about
what (sort of) harm they are vulnerable to. We have pointed out that one particularly
important marker for harm in research is the research participants' lack of access to
the benefits of research. This type of harm relates directly to exploitation. Following
Robert Mayer's account of exploitation, we have defined 'wrongful exploitation' as
a failure to benefit others as some norm of fairness requires. Wrongful exploitation
is particularly wrongful when it involves a failure to benefit vulnerable people.
From these considerations, we have developed a normative concept of benefit shar-
ing: those who contribute to developments in science and technology ought to share in
the benefits. The worry that such benefits may constitute undue inducements to partici-
pate in the research cannot be ignored, but in research that involves minimal risk, this
concern is largely misplaced and should not be used to avoid benefit sharing. The next
chapter discusses some of the benefit-sharing options available.
References
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http://www.cbd.int/doc/publications/cbd-bonn-gdls-en.pdf
