Beyond Traditional Ethics when Developing Assistive Technology for and with Deaf People in Developing Regions - Ethical Engineering for International Development and Environmental Sustainability - page 298

3 Ethical Frameworks for Developing Regions

As pointed out by Dearden's ( 2013 ) survey of ethics in the ICT4D literature, there
is a dire lack of research publications with respect to ethics in ICTD/ICT4D 1 litera-
ture. This section briefl y covers some examples that contribute to this small niche
area. Even amongst that literature, there are, in our opinion, too few pertaining to
Deaf or AT studies in developing regions.
Emanuel et al. ( 2004 ) adapted their highly referenced standard of Emanuel et al.
( 2000 ) to include items and extensions specifi cally for clinical research in developing
regions. The shifts are notable in the recognition of collaboration via communities
and social relationships; clearly beyond the scope of subject-oriented IRB pro-
cesses. Examples of the changes include the addition of collaborative partnerships,
value came to emphasise social value, fair subject selection become fair selection of
study population and respect for enrolled subjects became respect for recruited par-
ticipants and study communities. This reworked framework explicitly recognises
that researchers are coming from very different backgrounds and perspectives from
the developing regions in which the work is being done. In addition to 'explicating
a previously implicit requirement for collaboration', the 2004 version also provides
a set of 'specifi c and practical benchmarks to guide researchers and research-ethics
committees in assessing how well the enumerated ethical principles have been
fulfi lled in particular cases' (Emanuel et al. 2004 ). Their goal for the social
reorientation and the benchmarks is to minimise exploitation in developing regions,
by adding additional concerns to standard IRB processes, which could lead to
tensions and confl icts with those processes.
Bhutta ( 2002 ) also advocates several nontraditional points with respect to con-
ducting health research in developing regions. Bhutta emphasises that health
research ought to promote equity and local capacity building. Bhutta does not offer
specifi c solutions, rather that health and research issues must be linked to equity and
that we develop local research capacity together with capacity to determine and
enforce ethical standards locally. Thus, there is a need to involve stakeholders such
that ethical standards set in the North do not just necessarily get applied in the
South. In other words, Bhutta ( 2002 ) is saying that research ethics mandate empow-
erment of participants in developing regions. This could lead to methodological
tensions, especially for pure objective positivism that sees participant as subject.
Bhutta asks questions such as: is it ethical to research solutions that are not yet
affordable for a community, even though they may indeed work? Perhaps, as Buttha
suggests, it is best to rather go for lower-tech solutions that are affordable and still
work. It is also worth noting that research can bring costs down and, furthermore,
that costs can also be political and are not absolute.
Another perspective comes from Averweg and O'Donnell ( 2007 ), who presented
a draft code of ethics for community informatics researchers based on a need identi-

1 Note that in the community, there is a nuanced distinction between ICTD and ICT4D which is
very effectively explained by Sterling and Rangaswamy ( 2010 ) and is considered beyond the scope
of this chapter's purview.