Newborn DNA testing as standard by NHS England

[CarraghInish]

This sounds incredible, like the start of a totally new era in healthcare. And also a bit science fictiony.

Genome sequencing as standard using blood samples from the umbilical cord to analyse the risk of diseases and move towards preventative treatments.

There was a thread recently about the possible future uses of AI in healthcare and research. This sounds like it is only around the corner now. Is this exciting? Is this scary? Like a way to build a database of how to eliminate the UK population using targeted germ warfare, after super hackers have stolen all the DNA coding and sold it to the highest bidder?

Kidding. I think…

I think that’s the point, no? The beginning of a move towards prevention rather than cure, and the idea that this approach will cost less and lead to a healthier population overall?

There would be a challenging period when they are doing both but that should move pretty quickly to the money being saved on treatment later on being at least equal to the cost of testing and early treatment.

Also the significant reduction in costs to Education providers and local councils in social care costs will off set much of the initial costs.

This is a sad story, and I think it sounds like only a positive step forward if more children can avoid the degenerative effects of a preventable disease by screening at birth.

For me, if a child could be given a better quality of life through this process, it makes the questions about insurance premiums and mortgage approval sound meaningless.

And perhaps as medicine advances further the range of illnesses that are screened for at this first stage will be expanded.

I would say yes to this for my baby.

I was offered my most recent baby to join the Generations study and I declined for many of the reasons mentioned on this thread. I was concerned there could be unforeseen consequences for them in future and particularly concerned around the safety of the data from being accessed/sold/hacked in future. Once the data exists it exists iyswim. So declined.

I'm listening to The Age of Diagnosis by Suzanne O Sullivan which is all about this. It explores some of the moral, ethical and practical effects of early (pre?) diagnosis and is really interesting so far.

My first reaction was ‘how soon will it be flogged off’?

I don’t think this adds enough to the survival of the human race. We are just constantly firefighting the mess we are making of the environment, to make more money for the rich, so that they can wreck the environment some more and then we can firefight to make more money for them….

With the money they will make by flogging it off to the Americans, just as they flogged off the rest of the NHS databases.

We are cash cows to our government.

I remember that the very first concern about genetic testing years ago was that it would be used against us, to bar us from certain jobs and raise insurance premiums.

ATM.

Yes sorry, you make an excellent point and I should have taken the time to articulate both sides of the coin. With my cancer there is nothing you can do to prevent it, and that skewed my response. I also totally get that some people will absolutely want to make different decisions if they knew their life was going to be affected by a diagnosis at some point.

And of course, in your case you could have been monitored more closely and had early interventions.

I do agree with you it’s a fine line, and you never know how people are going to react knowing they are at risk. But what a great advance in medicine regardless that this is now a possibility.

hope you are doing well, I know what a shitty hand you’ve been dealt x

It'd be a nice database for the police, international criminal justice agencies.

In a similar vein, my cousin is now getting treatment for a rare disorder that was picked up recently (in his 30's) from bloods that were fine when he was 6. Slightly different as they were looking for markers to see if part of his condition was present in early life. But very similar.

if we can use science for our benefit we should. Obviously as well as testing, the NGS has to be able to fund the treatment. The stuff my cousin is on, is currently very expensive, but it's making a huge difference to his life & their research so win/win.

Having been on the receiving end of “information” given by the NHS I’d be HUGELY skeptical about informed consent and particularly the quality of communication when dealing with unexpected and frankly terrifying results.
Id also be less than confident around supposed “support” available.
Ive no doubt they would label a person asking questions and pushing for information as anxious and dump them onto mental health pathways.

Sleepwalking into whatever will.

Utterly appalling that the bbc article fails to mention ethics / consent. I would not consent to my baby’s DNA being added to a database. How dare they even just say that without consultation with the public? Just the assumption that everyone is OK with it.

There are so many potential issues with this it’s unreal. Your travel or medical insurance could skyrocket, you could get profiled as a psychopath. Do you remember when during covid times they came up with a priority list for who would get a ventilator, even taking into account autism?

People need to wake up.

^ The U.K. governments cavalier attitude to ethics and rights of ordinary people when international money is at stake can be seen in the FinTech scandals, the amount of money being laundered through the property market, or in the recent suggestions that creatives need to hand over their work to AI. Not even the dead can escape tech now.

Well it should hopefully mean that some of us wouldn't be waiting for a diagnosis.

36 years and waiting. Now got to have genetics testing

So many issues with this plan and it seems a complete lack of proper research into the ethical aspects of this.

Can we really trust government to keep this data safe and only use it for medical purposes?

I can see this turning into yet another way to spy on and control the population and a DNA database that will make its way to the police and the authorities in general...not to mention insurers and employers potentially using this to discriminate against individuals.

You can see in the US how quickly a democracy can turn into something much darker so there is no way I would support this.

On a slightly different track, I’ve never understood why a baby’s blood group isn’t identified and recorded when they do the PKU heel prick test. It could just be added to the child’s records from birth.

Blood group needs a bigger sample size….so I was told when i visited the lab in Sheffield which processes the heel prick tests.

Psychologically it's interesting. I have a condition that was a sporadic gene mutation. Probably occurred around puberty. Didn't know until I became symptomatic in mid 30s. It's significant that it would slowly kill me if I didn't have treatment, which I am now on. That was a lot psychologically. But trust me you would rather know and be able to do something about it.

A lot of this is about the fact that we cannot afford healthcare for these conditions, given the population size now and lower size of working age population due to declining birth rate, so we have to do what we can to prevent.

This is an excellent book. Some of the conditions she explores range from hutchinson’s to ASD and Lymes.
She makes no conclusion but I think I walked away with the conclusion that it’s better to know but only if there is some advantage to knowing.

I haven't quite got to the end but have listened to quite a bit. I was prepared to be annoyed by the ASD chapters as I have a son diagnosed but I actually think it's really well done. Really interesting and the way she explains about overdiagnosis really made me stop and think. I agree that she doesn't seem to come to a conclusion on anything, rather lay out the arguments for you to come to your own. I'm really enjoying it - can you tell?