From March 2003 to February 2005
Project Leader(s): Tom Shakespeare
Staff: from the University of Cambridge and colleagues from the Northern Genetics Service
Sponsors: Wellcome Trust Impact Award
Partners: University of Cambridge; University of Leeds
This three-year project involved the creation of a new website to give information for couples who are offered screening and diagnostic tests in pregnancy. The aim of the project was to help to promote informed consent by developing balanced and accurate information about the conditions for which screening is offered (covering Down syndrome, spina bifida, turner syndrome, Klinefelter syndrome and cycstic fibrosis). The project was led by Dr Tom Shakespeare in association with colleagues from the Universities of Cambridge and Leeds and from the Northern Genetics Service.
Because disabled people are the best experts on the experience of disability, we interviewed and photographing individuals with these conditions and their families. A range of voluntary groups, academics and professionals advised the team and reviewed the material we developed.
The website carried interviews with individuals and families directly affected by genetic and developmental conditions, plus photographs of them in everyday situations. Other sections of the site covered the experience of those who terminate pregnancies after testing, and text information about tests, termination and other aspects of these difficult decisions.
The website was formally launched at the British Society for Human Genetics in York on 13th September 2004. It was then evaluated by a team from the University of Leeds , led by Professor Jenny Hewison. This evaluation is available on request. Feedback from parents, disabled people and professionals was useful in revising the site. Presentations about the site have been made at professional and academic conferences in Newcastle, Lancaster, York and London.