Stakeholder views of prenatal screening and in utero therapies
Research type
Research Study
Full title
Deliberative dialogue: How can we screen for genetic conditions in pregnancy and deliver in-utero therapies in England in an equitable and ethical way?
IRAS ID
355347
Contact name
Melissa Hill
Contact email
Sponsor organisation
Great Ormond Street Hospital for Children NHS Foundation Trust
Duration of Study in the UK
0 years, 11 months, 26 days
Research summary
A significant number of children born in the UK will have a rare condition. Most rare conditions are caused by unexpected changes in the child’s genome. The genome is the body’s ‘instruction manual’. It contains the information that helps create, run and repair the human body. Newborn screening for nine conditions is currently offered to all babies in the UK. To find and treat hundreds of conditions early in life, several countries are exploring the benefits and challenges of using a test called “genome sequencing” for newborn screening. It may also soon be possible to test and treat genetic conditions during pregnancy. Genome sequencing tests for use during pregnancy are being developed that will simply require a blood sample from the mother. There are also new therapies being developed to treat babies with genetic conditions before birth.
Tests and treatments during pregnancy promise benefits for children with rare conditions, but there are also practical and ethical issues to consider. In this study we plan to find out what parents and patients affected by genetic conditions and health professionals think about these new tests and treatments. We will do this using a series of small workshops where people will be told about the new tests and treatments by clinicians, researchers and patients. Then everyone will be able to ask questions, discuss their views and make suggestions. Our research team will look closely at the information collected to help us understand acceptability, hopes and concerns, support needs and key areas for future research. Throughout the study we will work closely with a Patient and Public Involvement and Engagement Advisory Group that will include people with relevant experiences. They will help us design the study and understand the findings. Our findings will be summarised in a report written for a wide audience.
REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
25/NW/0144
Date of REC Opinion
14 May 2025
REC opinion
Favourable Opinion