Biology Reference
In-Depth Information
intuition of fairness. But if that is the case, then we could just as well go with a
norm of fairness based on our intuitive sense of what is fair. Hence the argument
that a procedural account is superior to a normative one is not clear-cut.
Another important feature of the above definition, for our purposes, is that even
consensual and mutually advantageous transactions can be wrongfully exploita-
tive. This is important because many, if not most, scientific research in developing
countries is of this sort. For example, consider again poor HIV-positive preg-
nant women in Africa who participate in trials for medication that is supposed to
prevent transmission of the HIV virus to their babies. In these trials half of the
women get the experimental drug, the other half a placebo. Testing the experimen-
tal medication against a placebo is both cheaper and scientifically more useful than
testing it against standard therapy. Critics claim that the researchers are exploiting
the women by giving half the group a placebo rather than the standard therapy; a
procedure that would be deemed unethical in developed countries. The research-
ers, on the other hand, point out that these women would not have access to any
therapy at all, experimental or standard, if it were not for the trials - and now they
stand at least a 50% chance of getting the experimental medication. The women
also agreed to participate, knowing that this would give them at least a chance of
receiving an effective therapy, which they would not have had otherwise. In short,
the participation is consensual and everybody benefits (or at least no one is worse
off, apart from the disappointment of raised hopes).
So why is this still a case of wrongful exploitation? It is so because the
researchers fail to benefit the women as fairness requires. It is unfair to the women
to use a placebo, rather than the standard therapy, as an alternative to the experi-
mental therapy, especially since the research is conducted against the background
that the women are poor and lack access to health care. It has to be acknowl-
edged that they are, at the very least, investing time and accepting inconvenience,
but 50% of them receive nothing in return. One must therefore ask: 'What do the
research participants deserve? What is fair benefit sharing?'
2.4 Benefit Sharing
The debate on exploitation and vulnerability has been going on for as long as
the debate on research ethics. The debate on benefit sharing, however, is more
recent.
Never Let Me Go
dramatically illustrates the concerns of the more tradi-
tional bioethics approach, which focuses on direct harm. In this chapter we are
more interested in benefits (although the avoidance of harm must clearly remain
the foundation for ethical research). With the rapid internationalization of research
(Tangwa
2009
, p. S17), even research participants who are not directly harmed or
coerced can be exploited, in the sense of not receiving fair benefits.
Not involving human beings in research at all is obviously not an answer.
Medical progress relies on scientific research. If nobody agreed to take the latest
tuberculosis drug during an experimental phase, none of us would ever get access
