Biology Reference
In-Depth Information
health care system through which the envisaged benefits to the community would
be channelled. However, there would be a practical problem in developing coun-
tries, where 'patients may have only limited or no access to healthcare' (Zong
2008
: 188). Channelling benefits through the regular health care system in devel-
oping countries has therefore been argued not to be a viable option.
The HUGO statement puts forward some valuable considerations that could be
used to address these problems.
In the case of profit-making endeavours, the general distribution of benefits should be the
donation of a percentage of the net profits (after taxes) to the health care infrastructure or
for vaccines, tests, drugs, and treatments, or, to local, national and international humani-
tarian efforts (HUGO Ethics Committee
2000a
).
It also recommends that benefits should not be limited to the individuals who partic-
ipated in the research, thus emphasizing the principle of solidarity as a basis for sharing
benefits. This principle is applied in contexts of group solidarity, such as participants in
research, or among those who share genes, or by region, tribe or disease group.
The principle of solidarity is identified in communitarian discourses and is
appropriate when focusing on a limited community or population. However, the
approach can be difficult to reconcile with the focus on justice in exchange (see
Chap. 2
), which the HUGO statement also recognizes, terming it 'compensatory
justice'. One example of the tension between the two is that
benefit sharing as a compensation for voluntarily accepted risks necessarily excludes indi-
viduals and communities who would be included in the case of a solidarity-based benefit-
sharing arrangement (Simm
2007b
).
According to the HUGO statement, compensatory justice seems to be satisfied
with 'the possibility of reimbursement for an individual's time, inconvenience and
expenses (if any)' (HUGO Ethics Committee
2000a
). The focus on community
also applies, according to the statement, in cases where donors of an unusual gene
benefit those with another disorder. Here, benefit sharing should also be independ-
ent of participation in research. The statement therefore, while mentioning com-
pensatory justice, seems to be much keener on the principle of solidarity.
17
3.6 UNESCO's Universal Declaration on the Human
Genome and Human Rights (1997) and Universal
Declaration on Bioethics and Human Rights (2005)
UNESCO was established on 16 November 1945. Its mission is to contribute to the
building of peace, the eradication of poverty, sustainable development and inter-
cultural dialogue through education, the sciences, culture, communication and
17
For a detailed analysis of the concept of solidarity in the context of benefit sharing see Simm
(
2006
).
