Biology Reference
In-Depth Information
These benefits, largely taken for granted in developed countries, are often not
available in developing countries. The further down the list one goes, the more
restricted the availability of the benefit, even in affluent countries, but benefit 1,
access to medical interventions, is generally available to all. Hence the term 'altru-
ism' is misleading in the context of scientific research in most affluent countries,
as those who contribute to research will always benefit at least their immediate
communities.
Benefit sharing (or lack thereof) in scientific research becomes a pressing prob-
lem when human research participants contribute to research but derive no benefits
at all, and in particular no access to successfully tested medical interventions. In a
(hypothetical) worst-case scenario, a research participant in Malawi makes a con-
tribution to bringing an intervention to market that is not tailored to her (local)
health needs and would never be affordable to her in any case. She will obtain
no knowledge or understanding of her own health condition and needs, the drug
or related research outcomes. The research is carried out without local infrastruc-
ture improvements ('helicopter in and out' research), and all commercial profits
derived will stay abroad.
The problematic aspects of this scenario apply whether the research participant
is involved in a clinical trial such as the HIV transmission study or donated human
biological samples. In either case a contribution to research is made by a member
of an impoverished, vulnerable population without any benefit to herself. Such a
scenario is impossible in affluent countries, and therefore to expect such altruism
or solidarity routinely from research participants in poor settings is not appropri-
ate. It is essential that feasible benefit-sharing frameworks be developed and that
they apply both to research participants involved in clinical trials and to those who
donate their biological samples.
The meaning of 'benefit sharing', then, is quite simple. Those who contribute
to developments in science and technology ought to share in the benefits, so if
those benefits are not shared with the contributors to scientific advancement, that
advancement is exploitative. For instance, if the traditional knowledge of indig-
enous peoples is used in commercial applications without any benefit sharing, the
indigenous group has been exploited. Likewise, if medical products are not rea-
sonably available in developing countries where their safety was tested, research
participants in those countries have been exploited (Hawkins and Emanuel 2008 ).
Here it is worth repeating why research participants may deserve something
in return for their participation that is not due to those who do not take part in
research. We are all human beings and, according to the Universal Declaration of
Human Rights, all have a right to access to health care (UN 1948 , article 25).
When we talk about fair benefits, we are referring to the principle of justice, a
principle that comes in many forms. Justice in exchange establishes the fairness
or equity of transactions. Distributive justice deals with the division of existing,
scarce resources among qualifying recipients. Corrective justice rights a wrong
that one has brought upon another, usually through a court declaring a remedy
to correct the given injustice. Retributive justice establishes which punishment is
appropriate for any given crime. (see Fig. 2.1 ).
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