Beyond Traditional Ethics when Developing Assistive Technology for and with Deaf People in Developing Regions - Ethical Engineering for International Development and Environmental Sustainability - page 296

should use consent procedures that are acceptable within the local community'.
Emanuel et al. ( 2004 ) go further on the topic of informed consent to recommend
that 'the local community should help to establish recruitment procedures and
incentives for participants'; 'disclosure of information should be sensitive to the
local context'; 'spheres of consent', ranging from village elders to leaders . . . may
be required before researchers can invite individual participation'; and 'special
attention must be given to ensure that individuals are aware of their right to and
actually are free to refuse to participate'. Thus, informed consent is itself a concept
arising out of a particular cultural context and may not be relevant in other cultural
contexts. What may be useful, then, is an ethical approval and overview process
defi ned in the local community by the people being researched such that issues of
concern to a particular community are raised.

2.4 Informed Participation

For another perspective on informed consent, consider the notion of informed par-
ticipation, which can be considered complementary to informed consent (Hersh and
Tucker 2005 ). Informed consent refers to an acknowledgement of the ramifi cations
of participation in a given research project, yet not necessarily being privy or even
involved with its formulation and execution. Informed participation, according to
Hersh and Tucker ( 2005 ), is conceived such that in order to achieve true action
research, the research agenda must be open from the start, with no hidden motives
or objectives hidden behind clever data collection. Several well-known examples,
such as the Milgram experiment, are described by Hersh and Tucker ( 2005 ) to
demonstrate that some research should not be granted permission to be carried out
in the fi rst place (again, an issue that an IRB does not contend with for myriad
reasons, e.g. political). The assertion is that 'ethical behaviour is a pre-requisite for
obtaining meaningful results' and that informed participation, in addition to
informed consent, is fundamental to achieving ethical behaviour. Going beyond this
initial basis of 'no hidden agendas' for informed participation, this chapter argues
that one way to do this effectively is to enact community engagement in the concep-
tion of and strategy for the research project before the process even begins. Thus the
community also helps to defi ne the concerns of the informed consent process itself,
rather than 'putting the cart before the horse', or in this case, the consent form
before actually engaging community members. Traditional processes, including
those frequently governed by an IRB for computing and/or engineering science, fail
to address this, as an IRB expects researchers to defi ne an information sheet and
consent form so that participants can grant permission for a predefi ned research
process before it begins. With community-based co-design and other forms of
action research, the research agenda and process are constantly evolving based on
the consequences of continual engagement between stakeholders and can indeed be
initiated by and with participants.