Biology Reference
In-Depth Information
The deCODE genetics case (Iceland) presents the example of a biobank which
planned to combine health data, genetic data and genealogical data to examine
common diseases such as arthritis, stroke and schizophrenia (Kaiser
2002
). The
controversial plans required new legislation to combine this information, which
raised many ethical concerns, particularly around consent and privacy. In 2003
the Icelandic Supreme Court concluded that the Act on a Health Sector Database
violated the national constitution, and thus the biobank did not go forward in the
intended form.
The Majengo sex workers case (Kenya) is about a long-standing research pro-
ject into sexually transmitted diseases involving a large group of severely edu-
cationally and economically disadvantaged women from a slum called Majengo
in Nairobi. The ongoing participation of hundreds of women over more than
20 years has contributed to experimental vaccine trials, and the research studies
are continuing.
The final case, which involves avian flu virus samples (Indonesia), has suc-
ceeded in raising the concerns of a developing country at the international level.
In 2006, the Indonesian government decided to withhold avian flu virus speci-
mens from World Health Organization (WHO) laboratories in alleged violation
of WHO regulations on public health emergencies. The country's health minister
argued that any vaccines based on Indonesian samples would be unaffordable to
the Indonesian population, and demanded a new benefit-sharing regime for virus
sharing.
Chapter 6
analyses gender issues in benefit sharing. If benefit sharing is about
justice, then it needs to be fair to both sexes. In the light of international commit-
ments to women's rights, Lucas and Castillo examine international guidelines on
benefit sharing for the extent to which they protect such rights. Through a discus-
sion of illustrative cases, the chapter demonstrates how gender-based power imbal-
ances can work against the implementation of guidelines and policies. The authors
highlight the importance of developing benefit-sharing strategies, processes and
mechanisms that are sensitive to power dynamics in local contexts.
Chapters 7
and
8
discuss the way forward for benefit sharing that relates to
human biological resources. Two alternative approaches to the current legal vac-
Yang advocate an inclusive approach to benefit sharing and argue that the CBD
should be expanded to include human biological resources. They argue that cur-
rent research and development do not respect the traditional differences between
plant, animal and human-based resources, and that any attempt to regulate inde-
pendently for human biological resources is destined to fail.
Chapter 8
by Schroeder, Gefenas, Chennells, Fournier, Feinholz and Sirugo
considers the possibility of using ethics review as the main mechanism to achieve
compliance with benefit-sharing requirements for human biological resources.
Given that the Declaration of Helsinki is widely accepted globally, and that its
benefit-sharing articles have been elaborated since 2000, the chapter investigates
whether monitoring through research ethics committees could achieve justice
for human sample donors. This chapter concludes the analysis of the specific,
