Realizing Benefit Sharing: Is There a Role for Ethics Review? - Benefit Sharing - page 174

chapter concludes that the provision of health care, however extensive, in return for
the donation of human genetic resources does not represent undue inducement, but
rather fair benefit sharing.
Keywords Benefit sharing • Research ethics • Developing countries •
Post-study access • Declaration of Helsinki
8.1 Introduction
'The arc of the universe is long, but it bends towards justice.' This is how Martin
Luther King Jr. expressed his hopes for the future. Of course, justice does not
arrive of its own accord. Four years after receiving the Nobel Peace Prize in 1964
for his non-violent work to advance civil rights King was assassinated. Today,
there is a black President of the United States, giving an indication that some of
King's dreams of justice have been realized. However, when we turn to interna-
tional justice, we note that the US is one of a handful of countries 1 that are not
parties to the international Convention on Biological Diversity (CBD). In the pre-
vious chapter, an expansion of the CBD was suggested in order to achieve justice
for donors of human genetic resources. 2 This chapter will explore the potential for
utilizing the existing, well-established system of ethical review to advance benefit
sharing.
How does one protect human research participants from harm and exploitation?
Four basic markers for the occurrence of harm in the research context can be dis-
tinguished (see Chap. 2 ) .
1. Unfavourable risk-benefit ratio
2. Breach of confidentiality or privacy
3. Invalid consent
4. Lack of access to the benefits of research.
Exploitation is mainly relevant to the fourth marker and equates to 'a failure to
benefit others as some norm of fairness requires' (Mayer 2007 : 142) (see Chap. 2 ).
Ethics committees have increasingly taken on the responsibility of preventing such
exploitation. They appear in two main varieties: clinical ethics committees have
been in existence since the early 1960s, mostly to support staff, patients and fami-
lies in making end-of-life decisions, while research ethics committees have been
in existence since the late 1960s (see below) to govern research involving human
participants (Aulisio 2003 : 841). 3
1 Three exceptions at the time of writing are Andorra, Holy See (Vatican) and South Sudan.
2 By human biological resources, we mean human biological samples collected for genetic stud-
ies and related data.
3 For more on clinical ethics committees see McGee et al. ( 2001 ), Kuczewski ( 2004 ), Slowther
( 2007 ) and ASBH ( 1998 ).