Biology Reference
In-Depth Information
Table 1.1 Main Governance Instruments for Benefit Sharing
Benefit Sharing (established sense)
Benefit Sharing (aspirational sense)
Convention on Biodiversity, 1992 : United
Nations (except USA). Includes national laws,
e.g. Biodiversity Bill, India, 2002; Biodiversity
Act, South Africa, 2004
Universal Declaration of Human Rights, 1948 :
United Nations
Declaration of Helsinki, 2008 : World Medical
Association. Includes national laws, e.g.
Brazilian National Health Council resolution
No. 196/96, 1996
Universal Declaration on Bioethics and Human
Rights, 2005 : UNESCO
meaning of benefit sharing: that those who have contributed resources to scientific
research ought to receive benefits in return.
Accessing human biological resources can be highly contentious in many
respects. In this topic, we do not attempt to deal with all of the many ethical con-
cerns that may arise. For instance, in 2010, the Havasupai Indians won a case
against the Arizona State University, and were able to limit researchers' use of
their blood samples (Harmon 2010 ). The case was successful because samples
had been used outside the terms of the original consent agreement. A violation of
informed consent is an ethical concern in addition to those regarding benefit shar-
ing. Another even more high-profile project that became publicly controversial is
the Human Genome Diversity Project. Many indigenous groups whose DNA was
collected for the project were seriously disadvantaged, economically and socially,
and concerns were raised about potential further discrimination against such
groups (Dodson and Williamson 1999 ). The discriminatory use of genetic infor-
mation is another serious ethical concern in addition to those regarding benefit-
sharing requirements, and will not be dealt with in this topic.
Chapter 2 by Arnason and Schroeder clarifies both the concept of benefit shar-
ing and the related philosophical concepts of vulnerability, exploitation and undue
inducement. The link between benefit sharing and exploitation is clear. If a resource
is taken from its rightful holders without their consent and without mutually agreed
terms, then exploitation has occurred, according to the CBD. Such exploitation is
particularly problematic if it involves vulnerable populations. Moving from biodiver-
sity to human genomics, this claim of exploitation has been countered by the 'undue
inducement' argument. It is an established principle that human research participants
should never be offered benefits for taking part in research, otherwise they might
consent to participate against their better judgement. Notably, the more vulner-
able a population is, the more of an inducement even the smallest benefit could be.
Having charted the philosophical groundings of the debate by defining vulnerability,
exploitation and undue inducement, the authors work towards resolving the tension
between undue inducement and benefit sharing.
Chapter 3 by Andanda, Schroeder, Chaturvedi, Mengesha and Hodges pro-
vides an overview of the key international instruments and guidelines that make
provision for benefit sharing. Legal documents are often categorized as either
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