Biology Reference
In-Depth Information
The fourth concern is that the entire practice of rewards or inducements is alien
to the noble ideals and altruistic intent of medical practice. In developed coun-
tries, the provision of health care services and the conduct of scientific research
are impossible without all sorts of market transactions. It is not clear why research
participants ought to be excluded from that. Even if we want to defend the altru-
istic motivation for participating in research in developed countries, this approach
is inappropriate in developing countries, as we have shown. It means that research
participants in developing countries would have to carry the risks and burdens of
participating in research, without having access to any of its benefits. This is sim-
ply unfair, and that is precisely why we need to find ways to design and implement
benefit-sharing mechanisms for human research in developing countries.
Even if we accept that the possibility of undue inducements may be a concern,
this would primarily be the case where there is a significant possibility of physical
harm. One might, for instance, object to the selling of kidneys, not to speak of
more radical organ donation, on the grounds that the donors (or, rather, sellers) are
likely to ignore the risks when presented with the possibility of considerable finan-
cial gain. Although one can live with only one kidney, there are immediate and
longer-term medical risks involved in kidney donation. In contrast, genetics
research that physically requires nothing more of the research participant than a
swab from the mouth involves minimal physical risk. If the tissue samples are also
coded, or fully anonymized, then the risk to the research participants is negligible
in the vast majority of cases.
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Where the risk to the research participant is mini-
mal, there can hardly be any issue of undue inducements (bearing in mind that
some risks, such as stigmatization, may be difficult to quantify).
2.6 Conclusion
In the context of research in developing countries, benefit sharing is a central
concern. As we have seen above, the problem arises when people participate in
research without the possibility of deriving any benefits at all. They contribute to
research without enjoying the benefits, which are made available to others who did
not participate. This state of affairs constitutes an injustice; more precisely, it is a
failure of justice in exchange. The research participants exchange their contribu-
tion for little or nothing at all. This state of affairs is
exploitative
. It is aggravated,
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The non-physical risks involved in these studies (in which only tissue samples and health data
are collected from the subjects) include violations of privacy, such as sensitive information about
the research subject finding its way to employers, insurers or law enforcement; stigmatization,
for example research on an illness in a certain group leading to an association of the group with
that illness; and distress or other psychological harm, when test results reveal, for instance, a
significant medical problem or false paternity. Coding and, in particular, the anonymization of
samples and data reduce most of these risks significantly. The collection of tissue samples and
health data for databases, as well as the re-use of samples and data for purposes other than those
originally intended, adds further risks and complications.
