A skeptical Dr. Miriam Stoppard says it might sound like a wise precaution, but gene sequencing opens a can of worms
(Image: Getty Images/Cavan Images RF)
More than a decade ago, there was a fashion among parents of newborn babies to save blood from blood
Placenta with stem cells as insurance against a later serious illness of the child.
Companies solicited new parents, offered this service and frankly intimidated many who naturally wanted to do their best for their parents Babies.
It’s happening again, only this time it’s gene sequencing of newborns to reveal genetic diseases that might later develop. At first glance, this sounds like a wise precaution to prevent disease in adulthood.
Last time I was less than wholeheartedly supportive and in the company of others Doctors, I don’t agree with this new way of looking at an infant’s genes.
At the heart of this controversy is Genomics England, a state-owned company that recently announced a pilot whole-genome sequencing program to screen 200,000 apparently healthy newborns for genetic diseases. It’s not just about finding extremely rare diseases, but also about capturing the entire genome sequence of each newborn.
As Professor David Curtis of UCL The Genetics Institute says a person’s genome is a vast amount of personal data, and it’s morally unethical to get it from anyone before they’re old enough to give permission. I agree. But couldn’t these tests reveal abnormal genes like BRCA1 and 2 that predispose to familial cancers? Yes, but most of these do not require action before a person is old enough to consent to screening.
There are two areas where future disease risk information would be useful – first, life insurance, and second, for forensic purposes. In the United States, genetic test information can already be used for life insurance premiums, but in the UK it’s not so easy.
And DNA samples from a crime scene can allow for rapid tracking and arrest.
One of my main concerns is the privacy and freedom of an adult who is ransomed while still a baby. Would this adult agree to have their genome sequenced? And do we trust our government?
Some governments are reportedly collecting DNA data and potentially using it for shady purposes — up to and including organ harvesting.
I am very skeptical about genome sequencing of babies who have nothing to say on the matter. We didn’t even agree that all adults should be subject to this surveillance.
Medical testing of newborns should be limited to the few conditions where testing is of real benefit to the baby.
https://www.mirror.co.uk/lifestyle/health/harvesting-baby-dna-uncover-potential-26629509 "Sharpening baby DNA to detect potential diseases is an invasion of our privacy" - Miriam Stoppard