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

Luckily nobody IS ‘forced to donate’ in this country. Everyone has the option to opt out, and even if they have not done so, the families of the donor are consulted before organs are removed and if they disagree about the donation it doesn't take place.
To reiterate, no one is ‘forced’.

No one needs their organs once they’re dead. I seriously don’t understand why you would begrudge the possible gift of life to someone that could use that organ. 🙄

when you’re dead, why not plan to do something good with your organs? You won’t need them!

Have you not read why they are doing it they have new technology to enable personalised health care and will be able to prevent certain illnesses before even symptoms begin. It also means people will not have to try 5 different drugs before they find the one that works for them. Iv had genetic testing due to a rare condition and it meant they knew what medication would work for that specific gene. I find medicine and science fascinating.

I also believe they will only test for treatable conditions. So no concern about giving someone a devastating diagnosis of Huntingtons as a newborn.

i must admit im a fan of whole genome sequencing. I’ve had mine done and this led to a diagnosis for which I can start treatment. It also means I now have answers to why I have quite a few issues…if I’d had these answers earlier I’d have avoided unnecessary surgery.

dd has also had her whole genome sequencing done. Surprisingly hers came back with no issues. Which is obviously good news and now means she has more information to help her come to an informed choice about whether or not she stops taking the medication she’s currently on. Her medication has risks to it. Before she got her results giving her the all clear she was adamant she’d take the medication for life. Now I think she might at some point feel brave enough to try stopping it.

To me it sounds like she’s saying:

i) there a fair chance we end up with an insurance-based system in future,
ii) in insurance-based systems, profit considerations affect what treatments get approved,
iii) especially in cases that are marginal, like a borderline-unsurvivable crash.

I don’t share her worries in the same way, but I also don’t think any of the above is a tin-foil belief. Which of them do you think is so?

I agree - why be so selfish to not help someone else who is in desperate need of an organ when you no longer need it

I agree that opting out should be something you need to do only once.

As for DNA testing, if this had been mooted when Boris Johnson was Prime Minister, you can imagine what his view would have been given that he went to court to try to stop public knowledge of one of his many children.

I’d hardly say this is ‘crafty’, have you ever spent time on a renal ward?
I really wish that by opting out of giving your organs you also opted out of receiving.

People clearly have no understanding of opt-out.

if your are not opted out then it is presumed that you are ok re organ donation, but the decision rests with your family who can decline even if you carry a donor card, so it’s important to discuss your wishes with them. nobody removes anything without consent.

ps. I am 5 weeks post transplant.

You’ve slept with him before. Why are you causing a fuss now?

”Because I don’t feel he respects consent” is a pretty powerful answer.

(I’m a donor, and I’m OK with an opt-out system, but I totally see why someone might feel strongly different. Especially if they’ve found themselves on the list when they had already opted out once).

I have and it pathologises well people. It should be used when clinical need arises. Eg to help decide which medicine to use if there is a choice that is DNA dependant (which is rarely). The fact you have had it rather proves the point. It’s available at the point of need. There is no need at birth.

Hopefully those reasons will also prevent you from receiving an organ transplant?

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

I certainly would! Because I have seen at first hand the appalling side effects and possibly even worse, the disappointment and despair caused by the failure to deliver the longed for ‘improvement’ to a wished for state of ‘normal’ health. I wouldn’t subject myself to that, and I would be very upset if anyone else I knew was putting themselves or more significantly DC through this process.

Life at any price? No thanks .

Surely health is more important than a job overseas?

I have zero respect for anyone deliberately opting out of organ donation. There is NO justifiable reason for it. That’s why people always cop out with ‘personal reasons’ when discussing it. The ‘reasons’ are usually complete nonsense. No religion forbids organ donation. Have your ‘reasons’ but don’t expect or demand respect for them.

But i suffered a lot unnecessarily before I had it. Also something as simple as antidepressants can be decided what's best for an individual through dna testing.

How offensive.

Thank you. I think anyone who wants to should be allowed to opt out. But then, like you, they should refuse to accept an organ.

Presumably you'd happily accept an organ donation if you were in desperate need. You just don't want to donate organs that you have no need of anymore that could change another persons life. Nice.

My parents neighbour and the daughter of a friend have both had kidney transplants after years of living a restricted life. Post transplant, they are living a near normal life - particularly my friends young daughter.
What would you prefer - they suffer and then die unnecessarily?

I have no issue with dna tests per se provided you are not required to disclose innorder to get rg insurance or loans, and dna data is not shared with other agencies eg police. And frankly vaccnations should be compulsory for children so if there’s no opt out for dna but retained opt out for vaxxthat is madly inconsistent.

If that's your choice, crack on. 👍

I didn't say anyone was forced, however some posters on here are coming across as quite judgmental of anyone who even mentions opting out. 🫣

So you’d rather your kids die than accept an organ donation and potentially live a normal life again? Riiiiight…

I’m also interested in what all those opting out of organ donation plan to have done with their organs when they’re dead and won’t care about whether they save a life of a child or get chucked in a skip.