Biology Reference
In-Depth Information
2.1 Introduction
The topic of benefit sharing emerged towards the end of the 20th century. Today,
it is frequently discussed at the highest levels of policymaking: the World Health
Organization, the World Trade Organization and the World Intellectual Property
Rights Organization. Yet its philosophical foundations and its relationship to other
ethical concepts in scientific research, namely exploitation, vulnerability and
undue inducement, are rarely discussed.
An example of end-stage renal disease and the availability of transplant kid-
neys can demonstrate these links. While dialysis can enhance survival for end-
stage renal disease patients for a limited period, the health and well-being of
humans is much better served with functioning kidneys. But the donation of a
kidney by a living person to secure the health and well-being of another is only
allowed in very limited circumstances, for instance as a gift to a close relative.
In almost all countries, the sale of kidneys is forbidden because it is regarded as
exploitative.
The horror of overriding the basic moral intuition that no human should
be exploited as mere organ providers was a theme of the 2005 novel by Kazuo
Ishiguro,
Never Let Me Go
(made into a film in 2010). The lives of Kathy, Ruth
and Tommy are followed through childhood, adolescence and early adulthood.
All three have been created (cloned, in fact) for one purpose: to provide organs
to non-clones, or 'originals'. In the end, they all die as a result of these organ har-
vests. What makes the story particularly tragic is that Kathy, Ruth and Tommy
experience human relationships in all their depth, with love and jealousy expressed
through art, and yet they are resigned to their fate and do not try to escape even
when opportunities arise, having been brainwashed into accepting their 'comple-
tion' (death).
No amount of monetary inducement could make up for such loss of life. If
any were offered, it would be regarded as an undue inducement to participate in
an ethically unacceptable activity. While the removal of one kidney is not gener-
ally life-threatening, countries that allow kidney donation for money are heavily
criticized (Scheper-Hughes
2003
), and it is not considered appropriate to discuss
resources such as donated human kidneys in the context of benefit sharing. The
fictional example in Ishiguro's novel follows the traditional lines of bioethical
debate, but, as this chapter will demonstrate, the concept of undue inducement of
research participants may look rather different in the context of donating human
biological resources. While the protection of vulnerable populations from exploi-
tation in scientific research must remain a focus of any action or debate in bioeth-
ics, it should not be employed as an easy excuse for researchers and their sponsors
to avoid any kind of benefit sharing.
We shall explore benefit sharing and its relationship to the concepts of vul-
nerability, exploitation and undue inducement in more detail before returning
to the donors of human biological materials such as DNA or blood (rather than
kidneys).
