[wiz21c]

From the page : "You can opt out of sharing your data"

No no no triple no. Don't opt me in. Full stop. I'll opt in if I want to.

99% of people just don't get it enough to opt out. So please, take a default that protects people first.

[Broken_Hippo]

...take a default that protects people first.

I'm not convinced opting out is the thing that protects people. More information going to the folks that can use it to help people is the option with the most protection for folks. Having health care that is responsive in the right ways helps people. Better medicine is better for everyone.

Folks like you - the ones with strong opinions - can opt out. It is like this because more people participate, much like organ donor programs get more folks by a "yes by default" policy. And like organ donation, more is better in this case.

If you have trust issues with the government or don't trust the safety of the rollout, perhaps elect a better government.

[alex77456]

https://news.ycombinator.com/item?id=27436310

[chrisseaton]

> So please, take a default that protects people first.

Their argument is that having high-quality data to plan healthcare is protecting people.

If people want the state to manage and pay for your healthcare, the state needs information to plan that for everyone. You can already 'opt out' entirely by purchasing your own healthcare if you aren't prepared to contribute.

[Silhouette]

The state has been planning national healthcare in the UK since shortly after WW2 without needing this before. So far, I have yet to see any argument from any medical professional that the proposed centralisation of fully detailed individual patient records is reasonable or necessary for the proper commissioning of personal healthcare within the NHS system. Evidently the doctors objecting in the linked piece don't buy that argument, and although it's not explicitly stated, it's quite likely that some of those GPs are also involved with their area's CCG.

Similarly, it is already possible for research groups to contact patients with certain conditions indirectly (via the clinical professionals treating them) and invite them to participate in research programmes that they might be able to help. Again, there is no need to create the most risky personal data lake in the history of the UK to achieve this.

[nanis]

It seems like every movie I found entertaining but a stretch in the 90s is becoming reality:

* Demolition Man https://en.wikipedia.org/wiki/Demolition_Man_(film)

* Enemy of the State https://en.wikipedia.org/wiki/Enemy_of_the_State_(film)

* Gattaca https://en.wikipedia.org/wiki/Gattaca

* The Net https://en.wikipedia.org/wiki/The_Net_(1995_film)

[dekhn]

I don't see anything in gattaca as having become reality.

[dkarp]

https://en.wikipedia.org/wiki/Preimplantation_genetic_diagno...

https://www.nature.com/articles/d41586-019-00673-1

23andMe/AncestryDNA

[dekhn]

the first link predates the movie and isn't really the same thing. IIRC they don't edit babies in the movie.

(you're arguing with a biologist who worked in this field, I'm making the point that the movie has not fundamentally come true, even if there are some details are the edges that resemble it).

[chrisseaton]

> So far, I have yet to see any argument from any medical professional that the proposed centralisation of fully detailed individual patient records is reasonable or necessary for the proper commissioning of personal healthcare within the NHS system.

The health service itself is arguing for it.

> it is already possible for research groups to contact patients with certain conditions indirectly

As the health service describes, an issue with this is that asking people to opt-in creates health planning assumptions that are biased, harming some groups.

[Silhouette]

The health service itself is arguing for it.

Branding aside, there is no single health service in England. The NHS is made up of many organisations and they cooperate to provide each individual's healthcare. To be clear, it is NHS England and the DHSC who are apparently pushing for this, and neither of those organisations has a direct clinical role.

[throwaway3699]

> If people want the state to manage and pay for your healthcare, the state needs information to plan that for everyone. You can already 'opt out' entirely by purchasing your own healthcare if you aren't prepared to contribute.

This is literally going against the underlying principles of the NHS. There is no 'transaction' going on here. I already contribute to the NHS through my taxes.

[chrisseaton]

> This is literally going against the underlying principles of the NHS.

Bizarre claim. The underlying principle of the NHS is socialised healthcare. Opting out of contributing to allow the NHS to plan for everyone's healthcare is the opposite of being social.

> There is no 'transaction' going on here. I already contribute to the NHS through my taxes.

Seems self-contradictory?

[throwaway3699]

Not really. The NHS is a function of life, as much as a publicly owned road or school. I don't owe it anything.

[chrisseaton]

> This is literally going against the underlying principles of the NHS

yet

> I don't owe it anything

[throwaway3699]

Two things can be true:

1) The NHS is free at-the-point of delivery, funded through taxes, much like schools and roads

2) That does not mean I owe them the right to unilaterally give away my data