Donating Human Samples: Who Benefits? Cases from Iceland, Kenya and Indonesia - Benefit Sharing - page 101

Table 5.2 Good Practice, Criticisms and Challenges of Icelandic Case
Good practice Criticisms Challenges

Extensive debates about
project in media,
parliament and society

Poor quality of social debate
(poorly informed, biased
and aggressive)

Encouraging open, informed
and fair debate in society,
as a democratic requirement

deCODE was to pay
Icelandic treasury annual
fee for operating database,
and share of profits. Funds
were to be earmarked for
health care, research and
development

Potential stigmatization of
population (for example,
if research found certain
genetic diseases to be
more common in Iceland
than elsewhere)

General challenge
that human genetic
resources should not be
commercialized

Stability and predictability of
benefit-sharing outcomes
when reliant upon private
companies (bankruptcy of
deCODE mirrors problems
in Nicosan case, see Chap. 4 )

Whole community would
share in benefits

'Implied consent' or opt-out
policy disadvantages
vulnerable populations

'Implied consent' or opt-out
policy violates Icelandic
constitution and major
ethical guidelines

Absence of international
legal regime

Uncertainty about data privacy,
and about who gets access
to and control over data.
deCODE's exclusive rights
to health data prevent other
researchers from accessing
data

Concerns whether free
medications are a form of
benefit sharing or an
attempt to turn population
into a laboratory, with
benefits accruing to
industry

5.3 HIV/AIDS Research and the Majengo Sex Workers
(Kenya)

AIDS is one of the most devastating illnesses the world has ever faced and
"remains one of the world's most serious health challenges" in 2012 (UNAIDS
2012 : 8). The number of people living with HIV in 2011 was estimated at 34.0
million (UNAIDS 2012 : 8). Despite the gradually falling incidence of HIV, Sub-
Saharan Africa remains the region most heavily affected, accounting in 2011 for
71% of all new HIV infections (UNAIDS 2012 : 11), 70% of AIDS-related deaths
(UNAIDS 2012 : 12), and 69% of all people living with HIV (UNAIDS 2012 : 8).
44% of the latter do not have access to the antiretroviral drugs that have contained
the disease in the developed world (UNAIDS 2012 : 51).
Despite decades of research activity, scientists are almost no closer to produc-
ing a vaccine against HIV infection today than they were in the 1980s. The main
ray of hope for developing a vaccine was provided by the 'Nairobi prostitutes',