Realizing Benefit Sharing: Is There a Role for Ethics Review? - Benefit Sharing - page 178

participants. To recap, paragraph 14 of the Declaration of Helsinki (WMA 2008 )
requires as follows:
The protocol should describe arrangements for post-study access by study subjects to
interventions identified as beneficial in the study or access to other appropriate care or
benefits.
Hence, every research project which is presented for ethics approval must out-
line in its protocol how it will deal with post-study obligations. This is particularly
important in the case of vulnerable populations, which is why the Declaration of
Helsinki (WMA 2008 ) adds in paragraph 17:
Medical research involving a disadvantaged or vulnerable population or community
is only justified if … there is a reasonable likelihood that this population or community
stands to benefit from the results of the research.
The question arises: why should humans not be able to donate their tissue for
the good of the world, without requiring burdensome and bureaucratic arrange-
ments for post-study access to benefits? It seems that most people who provide
blood or samples for research in the developed world are content to do so purely
on the assurance that the tissue supplied will be utilized for the betterment of
humankind. Why then should individuals from the developing world expect any
more from the same transaction? No work is involved in producing DNA, nor do
donors incur significant risks in donating samples. One could say that we need to
draw upon the altruism of humankind to ensure the provision of resources that are
so important for health research (Berg and Chadwick 2001 : 320).
Altruism, which in its broadest sense means promoting the interests of another
(Scott and Seglow 2007 : 1), is an interesting concept. Under scrutiny it reveals
complex questions about morality. For example, to donate one's blood or organs
with the proviso that they can only be given to those of one's own race would
be altruistic, but morally questionable. A UK government investigation found it
'abhorrent' that a hospital had accepted an organ donation on condition that it ben-
efited a white patient (BBC 2000 ). Hence, acts of altruism might not always be as
morally pure as they appear at first sight.
The eighteenth-century political economist Adam Smith maintained that ego-
ism or self-interest would lead to general welfare, stating that it was not 'from
the benevolence of the butcher, the brewer or the baker that we expect our din-
ner, but from their regard to their own interest' (Smith 1976 : 26f). On the other
hand, French philosopher Auguste Comte, who coined the term 'altruism' in the
early nineteenth century, believed that promoting other people's interests meant
that morality triumphed over egoism (Scott and Seglow 2007 : 15). Immanuel
Kant provided useful guidance on the motives behind altruism. He distinguished
beneficence ( Wohltun ), which is understood as doing good, from benevolence
( Wohlwollen ), which is understood as wishing well. Beneficence is then benevo-
lence in action; acting in accordance with a 'maxim of making others' happiness
one's end' (Kant 1996 : 452). While this might appear noble in essence, the motive
Kant provided for beneficence is actually close to self-interest. He claimed that
one would not want to live in a world where those in need were not supported or