Nothing about being able to opt out of DNA testing?

[BlueJuniper94]

So why is there no mention of being able to opt out of this? Isn't this just going to encourage some people to avoid engaging with HCPs altogether?

www.bbc.co.uk/news/articles/c1ljg7v0vmpo

Voluntary participation is a key feature of an ethical medical trial. Consent is a key principle in all ethical medical systems. Clinical science involves ethics.

Absolutely but why im genuinely curious as i can see nothing but benefits but I will be happily proven wrong.

🤣🤣🤣 What on earth are you waffling on about?

Seriously, step back from the Internet, your level of anxiety will be damaging to your health. Conspiracy theorists thrive on people who believe their scaremongering, they feed your anxieties, capitalise on your vulnerabilities and drive you further and further down into paranoia and a rabbit hole of fear. You're fueling their self importance whilst lining their pockets, that's what they're aiming for. Please step away.

The Opt in/Opt out scenario was published widely to enable people to have a choice. How can you possibly say you weren't given consent when you clearly knew you could opt out and therefore did? Seriously, have a think about what you're saying, it is completely flawed and illogical.

I would only take from a consenting donor. I wouldn't take an organ that the NHS had helped itself to. The experiences we had as a family I don't think personally I would take an organ & have refused blood donation principle.

The NHS helped itself to my brother's organs (completely against our wishes and consent) it was horrific for us & he was not allowed to die naturally with us. He was forcefully kept alive on a breathing machine. There was no closure for us.

Theres people out there with part of my brother, benefitting from his tragic death & from our suffering. I doubt they care or ever give any thought to what they are putting us through.

Conspiracy theorists always make me laugh they will literally believe anything they read online. Can you remember when people where saying the covid jab made them magnetic and we all needed to explain to them their just sticky and sweaty and need a wash.🤣🤣

Having to re-opt out is an issue though.
I renewed my driving license at the post office and was not asked if I wanted to renew the opt out option or not. It might not be on people's minds to realise they need to repeatedly opt out.

Have you been getting your information from Repo the Genetic Opera? Because not only was that a very very very bad film/musical, it was also fictional.

Frankly when I’m dead my organs are of no use to me so someone else might as well benefit from them. Unfortunately I think I’m too old for them to be of any use to anyone.

My concern is how much this will cost. It's all very lovely having these wonderful new advances in science increasing what the NHS can do but wouldn't it be better to invest the money in more chemotherapy facilities so that people aren't waiting so long for their cancer treatments to start, and other similarly critical but underfunded frontline services?

I work within the organ donation field and I would say you need to take this further. It’s strange to me how this would happen. We have people who are suitable donors who have opted in on the odr. When their families have been approached they have declined donation (usually because of the time it takes - around 24 hours to set up safely, or the thought or surgery to the body being just too upsetting). So despite the fact the potential donor may have opted in 8 times, when a family says no, donation doesn’t happen. The families wishes come before the patients as they’re the ones who live with the decision afterwards.
however if you’ve opted out this is rarely discussed with family. Occasionally a dr may check that was the last known decision of the patient but I am yet to see a family challenge this and we would go any further without evidence that is what the potential donor wanted.
Due to stringent regulations we are very specific and detailed about what organs and tissues are taken due to the HTA. Contact the HTA immediately if you feel any organs or tissues were taken without consent. Contact the governamnt. And the police!

It’s not unreasonable.

She’s happy to give her body, but not to have it taken. That’s pretty much how we feel about our bodies when we are alive, it’s not mock-worthy to feel like that about her body on death too.

Also, she felt it important to give when there was a shortage (because opt-in), and did so. If there’s no shortage (because opt-out), then the decision she is making is different. The moral calculus of opting into a system with a shortage is not the same as opting into one without.

That’s interesting. Are you a Jehovah’s Witness by any chance?

What pisses me off is the number of people who die having been sat on long transplant lists with no success to be honest.

What utter nonsense! You really are a conspiracy theorist aren’t you? Do you also wear a tin foil hat?

That's clearly sad, and great if donation can save lives, but nobody should be forced to donate. Attempted guilt trips aren't the way forward.

Would you accept organ donations for you or your children if needed? Or would your beliefs prevent that from happening?

What she is saying is not a conspiracy theory though. A conspiracy theory is believing there is a large and complex conspiracy to conceal something.

She’s saying she thinks that if incentives change, that might affect decisions on end-of-life care or continuing with treatment for people who already have slim chances of surviving.

You might think that’s an unfounded worry, but it’s not a conspiracy theory. If you characterize the concern fairly then you can look for evidence one way or the other on how plausible it is. If you just shout lizards then you are the one degrading the discussion.

This is already been done in some hospitals as a trial and has been up and running for some time. Each parent/s have a discussion with a hcp about it and it’s made clear they can opt out. I suppose there’s always a risk that the message is only as good as the person delivering it, though i believe there is also a detailed leaflet given to people.

I disagree. Life saving organs shouldn't be withheld for any reason other than clinical ones.

Refusing treatment because we don't like people's opinions is a very slippery slope.

Really? Legally the families of donors have to agree to the donation. Organs are only taken after the donor is clinically dead, it’s not some dystopian world where people are lined up waiting to have parts removed.
People who receive organ donations very much think about the donors as they know they’d likely not be alive without the donation. They have to take meds every day of their lives to prevent organ rejection, it’s not ‘out of sight out of mind’.

This is the information sheet used for the Generation Study.

https://www.generationstudy.co.uk/pdf/participant-information-sheet

People have always live past 30. I assume you exaggerated on purpose. The Industrial Revolution reduced average life expectancy among the poor to the 30s because of spelling working conditions, pollution and the disease epidemics caused by rapid urbanisation and globalisation (diseases like cholera being brought from warmer climes).

At present we DNA profile when there is a clinical need (family history or symptoms). There is absolutely no personal medical benefit to be gained from DNA profiling healthy people.

I’m assuming then that you would refuse an organ donation if medically required?

We recently opted one of our children out of a T1 diabetes screening project at school, because we didn’t feel it was our place to consent to her biological material being stored and used into adulthood, when she is currently too young to understand the concept and fully consent. Clauses included:

“I understand that my child's data will be stored for 10 years after the study completes”

“I agree to the collection, transfer and storage of my child's samples and/or relevant clinical data for use in this study and for up to 10 years”

“I agree that my child's anonymised data and samples may be shared and transferred to other research groups with whom we work in the UK, Europe, and the rest of the world, (including the USA), including industrial partners, for collaborative, ethically approved research studies.”

“I agree to researchers having access to my child's medical records in order to perform a follow-up study of my child's data at a later date, up to 10 years after the study”

I’m sure those are all standard clauses in research projects but it didn’t feel right to be giving permission for something that as an adult she may not agree to, by which time her personal data has potentially gone to numerous different organisations and jurisdictions.

I think what I’m getting at is that there may be valid reasons for opting out and this seems like a bit of an ethical minefield.