Beyond Traditional Ethics when Developing Assistive Technology for and with Deaf People in Developing Regions - Ethical Engineering for International Development and Environmental Sustainability - page 297

2.5 Beyond Traditional Ethics

These concerns move the discussion beyond traditional ethics procedures and
concerns. All of the above involve aspects of conducting scientifi c research, be it
positivist or post-positivist, or some combination, that are peculiar to technology
research interventions in developing regions. For example, Dearden ( 2013 ) dis-
cusses the ethical tension between 'detached enquiry' and 'help'. These differences
cause us to critically question our understanding of the role of researchers. For
example, to what extent should researchers get involved or distance themselves?
Help and involvement also raise ethical issues related to who sets the agenda, power
and control, as well as the possibility of dependence upon researchers and their
funding, and additional questions of researchers imposing their views and/or
providing assistance that is not required and/or appropriate.
There are many other questions that arise as a consequence of conducting
research in developing regions. For example, what constitutes fair subject selec-
tion and even selection of entire study populations? Another overriding concern is
how to make unaffordable solutions more affordable. Affordability is not some-
thing that is fi xed; it is affected by inequality due to socio-economics (see Bhutta
2002 ) and also gender concerns such as patriarchy. Consider how political issues
and power dynamics can also affect affordability - not only in the technology
arena, e.g. communications cartels. Consider HIV drugs that are deliberately kept
expensive by large pharmaceutical fi rms that do not like the fact that African
countries can produce their own much more cheaply. None of these issues are
easily addressed or static; and any or all can be changed. Many such issues are
addressed by bridges.org's Real Access/Real Impact criteria (see Tucker and
Blake 2010 because the bridges.org website is now defunct). There is also the
balance between person and community - this is different in different cultures,
e.g. in Africa, one interpretation of the concept of 'ubuntu' is that it can mean that
an individual is defi ned by membership in a community, which is very different
from the Western 'looking glass self'. In Africa, shared devices such as mobile
phones are quite common. And in Africa particularly, researchers and practitio-
ners often innovate to deal with frequent power outages and very expensive com-
munication costs.
Because of practical, socio-economic and cultural issues, particularly the
community orientation, Averweg and O'Donnell ( 2007 ) saw the need to defi ne
and classify the ethics peculiar to development informatics, similar to how
Emanuel et al. ( 2004 ) modifi ed their previously developed world orientation
from Emanuel et al. ( 2000 ). Effort to widen the scope of clinical research
ethics for the context of RLEs in developing regions and LMICs is the topic of
the next section.