MSP says informed choices key to new prenatal test

Jeremy Balfour says education is key as three-year project to monitor congenital anomalies and rare diseases in babies begins

Saturday 4th May 2019

A Conservative MSP says expectant mothers need to be given “as much information as possible” so they can make informed decisions as a new type of screening for disabilities in unborn children is introduced.

In an interview with healthandcare.scot, Jeremy Balfour, who himself was born with a disability, says: “the key issue is that the mother can make an informed choice and that she has all the information she needs, and that ultimately comes down to education.”

His comments come as Non-Invasive Prenatal Testing (NIPT) that can pick up genetic or chromosomal abnormalities such as Down’s syndrome is being brought in.

In a parliamentary response to Mr Balfour the Scottish Government has, meanwhile, said that a congenital anomaly and rare disease register is being set up to link data on congenital anomalies.

Expressing concern that more accurate testing could see more mothers choosing to end pregnancies when a disability is detected, Mr Balfour told healthandcare.scot health services workers should be supported so they can tell expectant mothers the “positive story” of what a child with disabilities can achieve.

 “As a society we have to say ultimately it is the mother’s choice, but the mother needs to be given as much information as possible to help with an understanding that yes, a disabled child will bring with it other issues, but it will also perhaps give you extra opportunities that you would not have expected.”

He continued:

“The first person you are going to be having that type of conversation with is the midwife and your doctor after a scan, and they need to be educated and to understand and be able to say that there is support out there.

“For example, with my disability, technology has moved on remarkably in my lifetime; there is so much more equipment available to help you live your life as normally as possible.

“And there are other charities, third sector organisations, and NHS services out there which will radically help you live your life, and I think all that information needs to be given to the mother, who then needs time to think and not be rushed into a decision – I think that is really important.”

“The first person you are going to be having that type of conversation with is the midwife and your doctor after a scan, and they need to be educated and to understand and be able to say that there is support out there.

“For example, with my disability, technology has moved on remarkably in my lifetime; there is so much more equipment available to help you live your life as normally as possible.

“And there are other charities, third sector organisations, and NHS services out there which will radically help you live your life, and I think all that information needs to be given to the mother, who then needs time to think and not be rushed into a decision – I think that is really important.

“The key issue is that the mother can make an informed choice and that she has all the information she needs, and that ultimately comes down to education.