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

Yes.

What don’t you understand?

No name-calling or shitty sarcastic comments (1-0 to you)

There IS a chance your organ goes to someone you morally (or otherwise) disagree with…how do you feel? That’s a real question. If it were my family member’s liver that went to George Best, I’d be mightily fucked off.

And you just shitting on Seren’s personal life story is horrible.

Then I also want to see a system in place whereby you only receive blood or blood products if you also donate. And the amount you receive in proportion to what you have donated (taking into consideration age or other mitigating factors)

DNA Screening the whole population, including people with no family history and no symptoms is not the improvement. Timely use of the technology for those it might benefit is.

Details not yet announced but I expect you will have to give consent (opt in) in the same way you do for the existing heel prick test.

@Genevieva it's because many genetic conditions arise without a family history (Google recessive inheritance, and de novo mutations) and if caught early can have a massive impact on the child's health.

If he wanted to donate, surely his mum would want what he wanted?

You've fallen from your moral high horse there. No one is compelled to feel any way about anything. Especially something as emotive as the death of their child. His mum can feel how she feels.

It reads to me as though this family felt underinformed about what would happen, and are now suffering emotionally because of that. That's a problem, even if everything was done by the book legally.

Is this all you have to say?

Do you know that there are quite a few countries in this world where you can go and get organs you need for not such a huge money (not huge in UK terms)? We're very sheltered here to never think about it, but this is reality in less developed world.

As to BBC reporting and this project - if I read this last year I'd be really excited about it. Right now my gut reaction was - how can we ensure that this info is not used for any other, less benign, purposes? example of private insurance springs to mind, but we simply don't know today how our DNA codes and samples can be used in 10-20-30 years time.

ETA: This genetic testing can offer huge life changing benefits but can also pose very significant societal threats. I guess the key thing here is not just being able to opt out, but to ensure that no copies on code or samples are stored anywhere at all but by parents or children themselves when they grow up. The moment they are saved in some database you lose control over it.

Is this hyperbole / an extension based on logic or your actual belief?

There seem to be three different parallel topics in your thread: universal DNA screening, organ donation and blood donation. With all of them there are issues of consent, but with DNA screening there is the added issue of data protection.

Practically speaking I see very little benefit in universal screening. It will through up issues that never needed to be found. Eg minor chromosome abnormalities that a person would previously have lived their entire lives with without consequence. It also creates a database that could be plundered at some point for nefarious ends, such as an enemy state creating DNA targeted pathogens.

Regarding being a donor or donation recipient: most people will never need an organ trans pant or even blood donation. I suspect the need focussed the mind in favour of both. But there are different types of donation with different levels of inconvenience and those most able to give are not evenly spread. Eg bone marrow is a lot less convenient to give then blood.

Blood donation is dependent on blood type. My blood is utterly useless because it is rare and only 2% of the population can receive it. I can receive any blood type though. If I died young I’d be happy for my organs to be donated, but I understand my blood type also makes them nigh on useless. In a system of reciprocity I would be denied blood or organ transplants because I can’t reciprocate. Thankfulky, should I ever need either, the NHS is built in a system of care at the point of need based on clinical assessment, not the beliefs of the patient.

The most important thing about organ donation isn’t whether you opt in or out it’s about the conversations you have with your family beforehand.

Statistically 50% of families say no to organ donation if the potential donor’s wishes aren’t known and haven’t been discussed with them. That figure drops to just 10% if they have.

The problem with opt-out is that people now assume that their organs will automatically be donated if they haven’t opted out, and they don’t take consideration of the fact that their next of kin still have the final say, even though this is clearly stated on the NHS blood and transplant website.

So people need t be having the conversations with their families regarding their wishes.

Nobody should be forced to donate their organs, and even if you opt to be a donor there’s a chance your organs won’t be eligible. I had more than one false alarm before I actually received my heart. Am having to be a bit more vague now in case this becomes traceable.

Nobody wants an organ from someone who would be forced to donate. People can say no for whatever reason they want. Personally I don’t think that family should be allowed to override a decision if someone actively carries a donor card, but the family do ultimately have that say as they’re the ones left behind.

With regards to whether your organs go to a paedophile, you’ll never know, and if you want to be picky then presumably you are so about all walks of life, never donate to charity etc in case a bad person benefits and so on.

But that’s a two way street. As a recipient there’s no guarantee that your donor was a good person either. After all, it’s the family who make the decision. So would you refuse to receive an organ in case it’s the organ of a paedophile?

You really think people should not donate because of the miniscule chance that the organ might go to a paedophile? Organ donations save lives, you want us to not save lives, just in case they're a paedophile? Whilst I'm not religious and don't agree with those that refuse to donate/accept donations as a result of their beliefs, I do appreciate that this is their religion and that's their choice. But encouraging people not to donate on the off-chance their blood/organs may go to a paedophile is possibly the craziest thing I've read on mumsnet. And this site is literally awash with crazies!

This is since the law changed to be opt out rather than opt in.
He died very tragically & don't think he had ever thought about dying - he certainly never would have opted in.

We definitely did not consent. He was separated from his wife but was legally still married. She was happy for his organs to be taken (she hated him & hated our mother in particular). As his loved ones we strongly objected.

It's not newsworthy at all as it legal. People just don't realize that is the reality. People think loved ones are given a choice but the reality is legally they don't have to.

We did speak anonymously when the law changed in England (in Wales it happened earlier) and would be happy to speak out anonymously if you know anyone that might be interested as I think it is important for people to hear. I spoke to a journalist from Guardian but she was not able to run the story (they are not allowed to run certain negative stories about NHS care)

Please don't speak on behalf of of my brother. You do not know him & do not know us.

He would have put his own mother's wishes first and he would have wanted her with him when he died.

I'd be fuming if this had been an option when I was a baby and my parents refused it because they thought it was pointless so I had to suffer. None of my conditions i have a family history of.

What happened to your brother is tragic and I am truly sorry for your loss. But you were misleading people by not giving the full picture. But nowwe haveit, he was on the register as a donor and his wife, his next of kin, did gave permission. So the NHS did have consent. It is unfair of you to discourage others from saving lives like your brother did by smearing the health service when they just followed guidelines.

I understand that you usually get an anonymised idea of where organs go after they are harvested although I appreciate his wife may not have shared this with you. I hope you did find out and that this gave you some comfort. Your brother is a hero for saving someone else's life.

What an appalling take on the lives of donor recipients! There are myriad people around the world who’s lives have been saved or massively improved (think corneal transplants) through organ donation.

Which one?

That's utterly ridiculous.
Some folk aren't allowed to donate or aren't able to donate.
What a horrible world you crave.

I did the same, muddyford, but my NOK are aware of my wish to be a donor if it's appropriate and happy to offer if the opportunity arises

So it was purely a principle thing, because as you rightly say a gift is a voluntary matter and I won't have the state deciding such things on my behalf

This. My DH passed away in ICU. He had opted in for organ donation but they still had to ask my permission as his next of kin. They can’t just take what they want.

I didn’t say I was owed an explanation.

Who is not allowed to donate?

No. I didn’t say what you’re seeking to clarify in your first sentence.

I actually just asked for genuine opinions on that dilemma - it’s part of debate. Don’t put words in my mouth. Thanks.

Of course. It's included in my advance directive.

Loads of people aren’t allowed to donate. Loads of medical conditions, if you’ve travelled to certain countries, had a recent tattoo, even if you’ve recently had anal sex with a new partner.

Pregnant women, HIV/AIDS etc