Question: when you do research projects, what do you find out?

Anna Middleton answered on 10 Mar 2014:

Hi @howdyjam
The research I do asks people what they think about using genetic technology. For example, we know that many deaf adults are really anti-genetics and I wanted to understand why, so I learnt some sign language and went into the Deaf community and asked them. What was fascinating was that I met many deaf adults with generations of deafness (i.e. it was genetic) and they did not mind having deaf children, in fact they preferred to have deaf children as a hearing child was ‘too different’ for them and they wanted to have children the same as them. When I asked if they were interested in using genetic technology to have hearing children they were horrified. They were really worried that hearing people would eventually wipe out the Deaf community by having genetic testing in pregnancy and choosing to keep a hearing foetus and ending the pregnancy if the child had the genes for deafness. This social science research has been pivotal in changing the way we view deafness and ‘what is normal’ – to many deaf sign language-using adults, being deaf is totally normal and they wouldn’t want it any other way. What I learnt from this is the need for health services to respect diversity and difference and to be tolerant if a deaf parent was anxious about engaging with genetics services.