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

https://www.organdonation.nhs.uk/register-your-decision/do-not-donate/

literally as easy as clicking on that link

why do you feel the government would want to con people into donating organs?? Apart from saving lives of others where do you think they’ll go?

I have religious and personal reasons for opting out, not that it's any of your business, but do not misrepresent me.

I believe my response was to someone opting out after the government decided they could take what they want. The end of my message makes this very clear.

I don't know how you end up at that conclusion, we're talking about the government, hiccups in any of their systems typically arise due to incompetence not an insidious desire to harvest organs.

Ah cool. You have no objection to actually being an organ donor, you're just happy for people to die so you can make a point. Nice.

Why would you opt out?

Let me try. Last year before GE I posted on this forum that Labour getting majority in 2024 will lead to Reform's majority in 2029. Unfortunately this seems to be materialising. If Reform gets in they will dismantle NHS and introduce US like health insurance model here.
Are you dead sure that if you get into car accident with your very basic health insurance that private health provider will do everything possible to save you when they have a wealthy patient with fancy insurance waiting for some transplant? This might sound very hypothetical now with a lot of ifs. Let's come back to this question in 2030.

Your argument makes no sense. So if you are in a fatal car accident next week you'll deny people your organs because of a 2030 scenario that may or may not come to fruition?
If your 2030 scenario works out - why not opt out then. Or if (which seems more likely) there isn't an opt out in your future world - do you think they'll be looking back to see who opted out in 2025 before deciding to treat?

Early detection of incurable diseases would have a disastrous effect on anyone needing private health insurance in the future. A friend of my sister's was diagnosed with an incurable disease and had to give a job offer in the USA because of it

You’ll be able to opt out if you want (I work in the field). As with all change there are pros and cons to this direction, if anyone is interested in reading more:
Generation project

edit to add link a letter to the BMJ highlighting challenges of the project.
www.bmj.com/content/384/bmj-2023-077060

Thanks for this - the BBC reporting is very poor. Looks like this is a research study not routine screening. I'm all for identifying serious conditions early on but there are major issues with whole genome sequencing at a population level.

What if you find a autosomal dominant conditions like Huntington's - you've diagnosed a child with a life limiting condition without any genetic counselling or proper informed consent, and now know one of the parents is very likely to be affected too. It's not ethical to test for anything that's not relevant to the child - and any condition that may affect them in adulthood (and is untreatable) is arguably not relevant to their childhood and any testing can wait till they are over 16 & can have genetic counselling and decide if they want a test.

Many conditions involve multiple genes plus interactions with ones environment so all you can say from sequencing is that you are at higher risk of diabetes/eczema/bipolar disorder or whatever. It doesn't mean you'll definitely get that condition and there's nothing you can do to avoid it that you shouldn't be doing anyway (having a healthy diet, weight etc).

Plus there's many genetic changes of uncertain significance - unique polymorphisms that might be relevant to disease, might not be. How will they be interpreted?

It's a great idea to expand specific testing for serious treatable conditions with a clear genetic cause OR to do whole genome sequencing for someone with a rare, hard to diagnose condition of possible genetic origin but anything else is of very unclear public benefit. Even in those limited circumstances you'll throw up a load of very, very hard to interpret results.

And, since you're not a hypocrite, I assume you've also opted out of receiving any potential organs or tissues should your health require it.

If someone refuses to be an organ donor then they should automatically be refused an organ and or blood if needed

Ofcourse you say you wouldnt accept an organ but i bet if it come to it, you would

How about blood?

I think that is a big exaggeration. If the state truly thought they owned your body then you wouldn't be able to opt out, but you can.

This person said they had religious reasons for not accepting organs so I’d bet they actually wouldn’t accept donations. Some religions believe you need all your organs in the afterlife so that’s why they’re against organ donation. Some religions believe the soul is contained in the blood so that’s why blood donation or receiving donation is not allowed.

For what it’s worth, I am not against organ or blood donation and I am registered for organ donation (though I’m sadly unable to give blood but I would if I could). I do deeply respect people’s religious reasons for not donating organs or blood though.

I also think bodily autonomy is really important and I think forcing people to donate organs or blood goes against this. I even think forcing vaccines would go against bodily autonomy despite the fact that herd immunity is so important and the fact that I’ve had all my vaccines including Covid.

It’s a pretty complex moral issue. Little children dying on the transplant list breaks my heart and if I died then I hope I could help them with my organs (though not sure if adults can donate to children)? People of any age should have the best quality of life and it’s a tragedy when lack of donors stops this. It’s also tragic when people refusing vaccines means that people who are unable to get vaccinated get unwell and die.

Despite those truths, it’s also very important for people to live by their convictions and beliefs. That’s an important part of being human. People are really ripping on smallglassbottle and I don’t think it’s quite fair.

Thats an odd way of looking at it. Anyone who feels strongly enough will know they can opt out. The reason it was brought in is because many people just never got around to opting in, its hardly a priority to think, "oh just in case I die tomorrow, better opt in and donate my organs" when you don't really care either way. If you DO care and don't want to, it gives you a kick up the ass to say so.

It should be once though, and not accidentally opted back in by default. That should be a proactive "opt in" if they're gonna hide it away in driving licence forms fgs.

The switch to an opt out system was a big change, I understand the motivations for it, but it's important to be clear about the difference between opt in and opt out.

It isn't a conspiracy theory to say the UK no longer operates a voluntary donation system, that's just fact. What we have now is an opt out system. At the time the change was made a significant group of people objected because ethically they felt the system should remain truly voluntary. Death is emotional, people have emotional responses to the thought of losing control.

It's important to talk about these things clearly. This issue has nothing to do with lizards and 5G.

If someone refuses to be an organ donor then they should automatically be refused an organ and or blood if needed That would be unethical. Decisions about organ transplantation are rightly made on clinical need and chance of success.

I agree. If you opt out then you should not be eligible for an organ donation.

I opted out simply because I don’t believe they have an automatic right to my body parts.
You need to give consent for many procedures in health care, so I don’t see how it’s right to harvest your organs without consent. Not opting out isn’t consent.

What a loaded question.
Organ donation is an amazing choice to make, but it's exactly that, a choice!

I hate to break this to you but as soon as you are dead it is up to your next of kin.

I think its great why would you want to opt out. Science and medical trials is the reason people live past 30 these days

I think it's great that choice is a concept, and that folk don't owe random strangers any explanation. 😬

Which is why we must inform them of our choices, ideally in a legally binding way.

Why would the article need to mention that you can opt out? It’s obvious that you can because you always can. Does every article about anything medical need to mention that universal fact? “New HPV vaccine introduced - but you can opt out”