Beyond Traditional Ethics when Developing Assistive Technology for and with Deaf People in Developing Regions - Ethical Engineering for International Development and Environmental Sustainability - page 295

2.2 Dynamic and Community-Driven Research Agenda

A second concern for applying traditional research ethics to ICT4D projects, espe-
cially interventionist action research projects, is that an ethics approval by an IRB is
not fl exible for ongoing negotiation, e.g. changing of research goal posts based on
input and direction from a participating community (Sterling and Rangaswamy
2010 ). This issue is also noted by Emanuel et al.'s ( 2004 ) revision of their original
document (Emanuel et al. 2000 ) to specifi cally address clinical research in develop-
ing regions, especially along the theme of the negotiation between stakeholders,
which serves as the main reason for their revision. In some communities, decisions
on participation and who participates and how may be made by the community and/
or its elders or traditional leadership. This can be counter to formal and bureaucratic
IRB ethics processes and may or may not be appropriate for a community. One can
envisage a scenario where the ethics processes are governed by the community
rather than an IRB. On the other hand, not everyone, possibly even the researchers,
must blindly adhere to the values of a given community, although those values must
still be respected. A situation can also be envisaged whereby people are pushed by
their own community into being participants; and they might not accept that way of
decision making (see Kaplan 1996 for some interesting examples of this in rural
South Africa). Another way of looking at it is that IRB-orientation imposes a fi xed
process upon the iterative and evolving cycles of research as prescribed by
interventionist action research. The terrain is fraught with permutations, from all
sides: the researcher, community members, informal and formal leadership and
government. The point here is that community-driven research agendas can change
in unexpected ways.

2.3 Informed Consent

A third concern is how informed consent is explained and recorded. An IRB requires
a research (team) to defi ne informed consent issues up front and have participants
acknowledge these up front, too, in writing. Sterling and Rangaswamy ( 2010 ) are
particularly critical of this traditional notion of both proscribing and recording
informed consent because of how (a) stakeholder relations change over time and
(b) traditional informed consent can harm community involvement and trust of
community (for the researchers) simply due to its alienating mechanisms such as
signing offi cial forms that participants may not fully comprehend, e.g. if they are
Deaf and possess limited text literacy, or putting an 'X' when participants cannot
write. Sterling and Rangaswamy ( 2010 ) make suggestions such as not using pen
and paper to collect informed consent signatures, e.g. recording oral consent or
video recording signed language consent along with explanation of the consent
form in signed language. Emanuel et al. ( 2004 ) would agree, stating that 'researchers