Realizing Benefit Sharing: Is There a Role for Ethics Review? - Benefit Sharing - page 188

terms of access to health care could deepen rather than lessen, and concentrating
on smaller details could cause the bigger picture to be overlooked.
Based on the three challenges to post-study access discussed above, one could
venture that 'other benefits' may be a more promising and consistent benefit-shar-
ing tool for research ethics committees to require.

8.5 Other Benefits

In practice, when benefit sharing is addressed through ethics review, 'other ben-
efits' are generally thought to be a more realistic arrangement than post-study
access. The most common example of this type of benefit sharing is access to
health care during a study, as was and is the case for the Majengo sex workers (see
Chap. 5 ) . However, there are two problems here.
First, the latest (2008) Declaration of Helsinki may inadvertently have
restricted the use of 'other benefits' as a benefit-sharing mechanism. The 2004
declaration required study protocols to include information on post-trial access or
'other benefits', and imposed no restrictions on what might constitute 'other ben-
efits'. It did not exclude, for example, health care during or after a study. By con-
trast, paragraph 33 of the 2008 declaration states:
At the conclusion of the study , patients … are entitled … to share any benefits that result
from it, for example, access to interventions identified as beneficial in the study or to other
appropriate care or benefits' (WMA 2008 : paragraph 33) (our emphasis).

This formulation aligns with the general usage of terms, as one usually speaks
of post -study obligations. However, it means that comprehensive health care deliv-
ered during a study, even a longitudinal study, is no longer included under 'other
benefits' as a benefit-sharing mechanism. 7 Yet many of the Nairobi sex workers
interviewed in the course of our research indicated that access to health care was
an important benefit they received in return for donating samples (see Box 8.1).

Box 8.1 Comments from sex workers in Majengo on the provision of
free health care 8

• I don't pay for the medicine, I don't do anything with respect to them, but
they give me medicine. When I get some little ailment, they help me.
• I came and joined the clinic and I have been helped a lot. I used to have

7 Of course, one could argue that comprehensive health care during a study offers too little in
terms of benefit sharing. However, where comprehensive health care is offered to study partici-
pants and their families, sometimes for decades, as is the case with some Nairobi sex workers,
the fair exchange model available to donors from affluent countries is being approximated.

8 Interviews with Majengo research participants, GenBenefit, April 2007.