Genomic Heroes disguised as midwives!
Molly and Amy are both midwives working at St. Thomas’ Hospital in London. However, they are also part of a new and exciting national research study that will help the NHS to diagnose rare genetic conditions.
The study is called The Generation Study, and Molly & Amy are some of the first midwives in England to be actively recruiting women to take part. In total 100,000 newborn babies will be part of the study which takes a small sample of blood from the umbilical cord when the baby is born and is screened for over 200 rare genetic diseases.
Researchers won’t detect any of the 220 genetic conditions on the list in 99% of the babies, but anyone who is found to have a rare genetic condition will receive treatment early in their lives and in some cases cure them.
Both Amy and Molly started their careers as midwives and have since become clinical research midwives. That means they are working a range of research projects that involve pregnant women and their babies. The Generation Study feels different.
“Most research projects involve small numbers of pregnant women. The Generation Study aims to find 100,000 women and their newborn babies. Projects of this scale don’t come around very often!” says Molly.
Amy continues, “This is a really unique opportunity to be involved in a study that will have far reaching results for all of us. It could change the way we are diagnosed with genetic conditions and help us to get treatment much earlier in life.”
The study is screening a baby’s DNA, known as their genome, for over 200 rare genetic conditions such as haemophilia and spinal muscular atrophy. Nearly all of the diseases on the list can be treated if caught early on in the baby’s life.
Molly & Amy’s job is to talk to women during their pregnancy and offer them the chance to be involved. They then support women through the study.
“As a research midwife, I have more time to chat with women and support them. Together, our team has just recruited our 500th woman to take part. Every day we are helping more women to take part.”
Amy has become so interested in genomics, that she has embarked on a Genomics Masters. There are a whole range of genomic education opportunities for midwives and nurses.
For more information about The Generation Study visit https://www.generationstudy.co.uk/register-your-interest
