Beyond Traditional Ethics when Developing Assistive Technology for and with Deaf People in Developing Regions - Ethical Engineering for International Development and Environmental Sustainability - page 299

fi ed at the second annual conference of the Community Informatics Research
Network (CIRN) in 2005. The draft code repeatedly stresses consideration of com-
munity (in addition to individual) and was intended to evolve. It contained explicit
requests and suggestions for comments and appeared in the Journal of Community
Informatics 2 years later. Somewhat apathetically, no one has commented on it and
only two authors have cited it (according to Google Scholar). Several years later, the
journal editor repeated a plea to examine this code (Gurstein 2010 ), but there seems
to be very little interest, as the draft code does not yet appear to have been modifi ed.
The draft code is notable for several bullet points contextualised for community-
based research:

￿ Respect for human dignity, e.g. 'protect the interests of the person and
community'.
￿ Subject-centred perspective, e.g. 'active involvement by research participants',
'researchers and research participants may not always see the harms and benefi ts
in the same way'.
￿ Respecting vulnerable 2 persons, justice and inclusiveness, e.g. 'the CI [community
informatics] researcher should refl ect on the consequences of research engage-
ment for all participants and attempt to alleviate potential disadvantages for any
individual, category of person or community'.
￿ Ensuring appropriate use and ownership of research data, e.g. 'ownership of
information . . . shall vest jointly with the community' and 'research protocol
negotiated with the community'.

4 Experience in the Field

Keeping these issues in mind, we now turn to our experience in the fi eld. We portray
illustrative examples from our fi eldwork and tie them to both traditional and nontra-
ditional ethical concerns as outlined above.

4.1 Background

According to our provincial Deaf Federation of South Africa offi ce (DEAFSA
2014, Personal communication, Western Cape Provincial Director, Cape Town,
South Africa), there are approximately 1.4 million who have some degree of hearing
loss, out of 55 million South Africans. Of these, roughly 600 000 are 'profoundly
Deaf', thus, 1% Deaf and 2.5% hard of hearing, of the South African population,
respectively. Others estimate the number of Deaf people who use SASL between

2 The word 'vulnerable' is problematic; it can be used to protect or to disempower. Note 'protection'
can also be problematic.