‘Harvesting baby DNA to uncover diseases is an invasion of our privacy’

A skeptical Dr Miriam Stoppard says it may sound like a wise precaution, but gene sequencing opens up a can of worms

More than a decade ago there was a fashion among the parents of newborn babies to save blood from the
placenta containing stem cells as insurance against the child developing a serious illness later.

Companies solicited new parents, offering to provide this service and frankly intimidated many who naturally wanted to do their best for their babies.

It’s happening again, only this time it’s gene sequencing of newborns to uncover genetic diseases that might develop later. On the face of it, this sounds like a wise precaution to head off adult-onset disorders.

I was less than wholeheartedly supportive last time and, in the company of other doctors, I don’t go along with this new way of surveying an infant’s genes.

At the centre of this controversy is Genomics England, a government-owned company, which recently announced a pilot programme of whole genome sequencing to screen for genetic diseases in 200,000 seemingly healthy newborns. This isn’t just to find extremely rare ­conditions, it’s to acquire the whole genome sequence from every newborn baby.

As Professor David Curtis of UCL Genetics Institute says, a person’s genome is a huge amount of personal data, and acquiring this from everyone before they’re old enough to give permission is morally questionable. I agree. But couldn’t these tests reveal abnormal genes such as BRCA1 and 2 which predispose to familial forms of cancer? Yes, but most of these don’t require action before a person is old enough to agree to screening.

There are two areas where the information about the risk of future disease would be useful – firstly, life insurance, and secondly, for forensic purposes. In the United States, genetic test information can already be used for life insurance premiums but it’s not as straightforward in the UK.

And DNA samples from a crime scene can enable fast tracking and arrest.

One of my major concerns is the privacy and freedom of an adult being ransomed when they’re only a baby. Would that adult agree to having their genome sequenced? And do we trust our government?

Some governments are reportedly amassing DNA data, possibly using it for doubtful purposes – up to and including forced organ harvesting.

I’m highly sceptical about genome sequencing of babies who have no say in the matter. We haven’t even agreed that all adults should be subject to this surveillance.

Medical testing of newborns should be restricted to the small number of conditions where testing provides a real benefit to the baby.