Biology Reference
In-Depth Information
workers receive in return for donating a range of biological samples is access to
health care for themselves and their immediate families over considerable periods
(see Chap. 5 ). Research into the case has noted the following:
• Longer-term access to comprehensive health care is highly valued by the sex
workers, for whom this would otherwise be unobtainable.
• Providing access to health care is a feasible means of beneit sharing, as the
benefit is congruent with the setting. Medical researchers are much better
equipped to provide health care than to implement other kinds of benefits, such
as improved employment or livelihood opportunities. 3
• Longer-term access to health care approximates the ideal scenario described for
affluent nations (altruistic donation in return for the realization of the human right
to health), which must remain the aspiration for all. This benefit-sharing measure
therefore harmonizes with the broader, urgent pursuit of access to health care for
all, while leaving the altruism model of medical research substantially intact.
The Majengo sex workers' project has been going on for decades, and many of
the sex workers have contributed to research for a considerable time. A long-term
relationship, such as this one, between a research project and a local population
increases the feasibility of providing health care as an alternative benefit.
We recommend long-term relationships between research projects and
research participants, and we believe that the provision of longer-term access
to health care should be the default benefit-sharing option for vulnerable pop-
ulations in developing countries who donate biological samples and take part
in associated health research. 4
10.5 But What About Undue Inducement?
All major ethics guidelines prohibit undue inducement, and many prohibit any
commercialization of the human body. Undue inducements, such as payments, are
said to jeopardize the voluntary nature of informed consent and thereby invalidate
it. Also, such payments might induce research participants to accept unreasonable
risks or burdens against their better judgement. We categorically do not recom-
mend cash for DNA.
In the context of guarding against undue inducement for the donation of human
biological samples, we are on safe ethical ground when we recommend access to
health care as the default benefit-sharing option. There are two mutually reinforcing
3 In our interviews in Majengo the sex workers told us that help finding alternative employment-
would be a desirable benefit. However, as one of the doctors explained, medical staff are ill-placed
to provide such help.
4 For instance, the donation of DNA for genotype research could be linked with research into the
phenotype (which might require information about lifestyle).
Search WWH ::

Custom Search