Towards Best Practice for Benefit Sharing Involving Access to Human Biological Resources: Conclusions and Recommendations - Benefit Sharing - page 217

reasons for this. First, the minimal risk and minimal burden involved in donating
human biological resources invalidates any risk-related argument against induce-
ments. Second, the prohibition of undue inducement is designed to avert actions that
are prejudicial to the donor's health, and providing access to health care in a setting
where it is not otherwise available is generally the opposite: it is conducive to health.
It is only in specific cultural contexts that the promise of health care might give rise
to unacceptable risks or burdens, such as in communities for whom blood is sacred 5
or where potential discrimination, privacy or racial stereotyping are concerns
(Kowal 2012 ). We recommend further research into cases where the promise of
health care might induce research participants to violate cultural prohibitions.
To recap, concerns about undue inducement are much less problematic
when a research intervention poses only minimal risk and minimal burden.
In such cases, the provision of health care (however extensive and for however
long) should not count as an undue inducement. On the contrary, it should be
seen as desirable benefit sharing.
10.6 Achieving Compliance Instead of Paying Lip Service
Benefit sharing has been accepted as a principle in many ethics guidelines, both
national and international (see Chap. 3 ) . This acceptance is linked not only to
the international standing of the CBD, but also to the inclusion of benefit shar-
ing in the Declaration of Helsinki (WMA 2008 ) since 2000 and in UNESCO's
Universal Declaration on Bioethics and Human Rights (UNESCO 2005 ) since
2005. However, the presence of benefit sharing as a principle in ethics guidelines
does not automatically lead to its realization. In fact, the dearth of good-practice
examples could almost lead one to conclude that the principle is being paid no
more than lip service with regard to human research participants, be they clinical
trial participants or, in particular, donors of biological resources.
With human biological resources excluded from the scope of the CBD, there is
no binding international legislation that covers benefit sharing for human sample
donation. The fact that international ethics guidelines such as the Declaration of
Helsinki are not legally binding is not in itself an insurmountable obstacle, as such
guidelines, if applied generally and consistently in support of prescribed prac-
tices, can gain the status of customary international law. For example, the prac-
tice of obtaining informed consent before undertaking medical research is widely
accepted on the basis of non-binding ethical guidelines.
There is one recent development signifying progress towards securing justice for
the donors of human biological samples, and it follows the Indonesian government's
5 Tensions between Western researchers and the Havasupai Indians were made public in a case
brought by the tribe against Arizona State University. One of the reasons given for the claim of
exploitation was that blood is sacred among the Havasupai (Harmon 2010 ).