Since 2006, we have worked with university researchers to study antenatal screening. We found that pregnant women and their partners do not always receive the information they need to help them to make decisions about antenatal screening.
Our studies have shown that midwives and obstetricians often feel they lack vital information about disability to guide expectant parents through the screening for fetal abnormality.
Midwives see themselves as the right people to advise and inform women, but many do not have balanced, up-to-date information about the lives of people with learning disabilities.
National standards say that advice should be ‘non-directive’ yet some women still report feeling pressured into having a termination if screening shows their baby might be disabled.
The first set of findings are detailed in the report, Genetics: screening, choice and rights.
The findings in this initial report led us to more widely gather the views and experiences of expectant parents and healthcare professionals.
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