Biology Reference
In-Depth Information
the sharing of advantages derived from the use of resources with resource providers
in order to achieve justice in exchange. This just exchange should focus particularly
on the clear provision of benefits to vulnerable populations who may lack reasona-
ble access to resulting products and services of scientific research. At the same time,
the exchange should not
provide unethical inducements
. When research participants
receive such benefits as health care or money, or even food, for their participation
in research, the question arises whether those benefits constitute unethical or undue
inducement, a sort of coercion or some other violation of their autonomy. We will
conclude this chapter with a discussion of 'undue inducements'.
2.5 Undue Inducements
Can benefits provided under a benefit-sharing mechanism constitute 'unfair
inducement'?
13
Let us return to Kazuo Ishiguro's novel. If Kathy, Ruth and
Tommy had been fully informed of the consequences, and been asked as adults
whether they wanted to donate their organs, and had then said 'yes', because, say,
they had been offered a million dollars in return and three years to spend it, would
this have been fair benefit sharing? No, clearly not. But would it be a case of
undue inducement? It may seem so, for instance in the light of the warning against
undue inducements in CIOMS guideline 7.
The payments should not be so large … or the medical services so extensive as to induce
prospective subjects to consent to participate in the research against their better judgment
('undue inducement') (CIOMS
2002
: guideline 7).
On a second look, this example shows one way in which charges of undue
inducements fail. The sort of radical organ harvesting practised on Kathy, Ruth
and Tommy results in severe illness and ultimately death. Offering them money
for their organs and suffering may be considered an additional wrong, but not
offering them money does not make their contribution morally acceptable. The
moral problem is the immense harm resulting from their contribution, and the
issue of payment makes little moral difference.
First of all, as we have already made clear, benefit sharing is hardly ever
about profit sharing - that is, about whether a million dollars change hands for
a kidney, a liver or other organ. But more importantly, what makes sense for liv-
ing organ donation or participation in certain clinical trials might not be the best
basis for judging which benefits may be appropriate in return for taking part in
genetic research or donating a blood sample. In the remainder of this section, we
will explain why fear of undue inducement should not be allowed to defeat efforts
to achieve fair compensation for research participants. Although the line between
undue inducement and appropriate compensation may be a fine one, it should not
13
This section is based on Arnason and Van Niekerk (
2009
).
