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

I haven't heard calm your tits for a while 🤣🤣🤣

No. Regardless of if you have opted in. Or if you’ve NOT opted out, it is always the nok who can over rule the decision. And if it’s a split family (half want it, half don’t) we don’t go ahead with donation. Hence my bewilderment that some people feel patients are whisked to theatre against the families consent. It just wouldn’t happen. No health care professional would allow it. And the consent form is completed with the family by a specialist nurse employed by NHSBT. It’s not the hospital NHS staff that arrange the donation process. They refer to the regional organ donation team and they come to the hospital to assess the patient and approach the family.

Ah this now makes sense. If his wife was nok then she has consented. Were you all at the hospital with her? split families are complicated but no specialist nurse would continue if there were people there speaking up saying they didn’t want it.
I am truly sorry for your loss. If your brother was neurologically dead his official time of death would have been on the icu before he donated and people would have still been allowed with him after. If he was a donor after circulatory death he would have passed away in the anaesthetic room and he would have been allowed someone with him. Potentially his wife may have been there but not told you? But there will have been a nurse with him throughout making sure he was treated with the dignity and respect he deserved. I hope in time to come you find some peace knowing that your brother was a true hero in every sense of the word.

Not true. You do it online. It is then completed.

I do feel, quite strongly, that if you opt out of donating, you should automatically opt out of receiving as well...

Yes, then they send you a letter and you have to go back online and fill something else in. Online.

I did Ancestry and soon realised that my mum’s dad was not her dad. Was a bit of a shock to say the least!

What? You'd veto your husband's wishes?
Why are you and 5 of your children so anti organ donation? Would you all also refuse to receive a life saving donation?

I'm a medic too and I honestly don't see how newborn genomics will be useful for studies of chemotherapy response in midlife & older adults. Surely what you need there is a genomics study of people with the cancer of interest looking for somatic or cancer genetic factors that correlate with chemo response. I understood that's it's often the genetics of the cancer cells that are relevant to treatment response.

I don't think practically or ethically we can or should have a system where recieving an organ or blood is dependent on donating (or being willing donate). For blood there is a lot of reasons why people cannot donate (weight, travel, ill-health etc). I meant that it's a moral question we should ask ourselves when considering whether we should opt out of the organ donation register.

They can all opt in to donate but whether they’re accepted is not up to them. Would you want an organ from someone with cancer? Hepatitis?
The vast majority of people I've known to receive organs have received them from young, healthy people who have sadly been in accidents and met an untimely end. Not people who have died because they were poorly (like most people who die).

I’d willingly donate blood, they don’t want mine because I have had hepatitis.

@alexalisten I guess it’s this sort of thing the pp is concerned about.

Organ and blood donation aside… DNA collection is on a whole different level.

People need to think long and hard about the implications, of which we haven’t even fathomed yet, of providing DNA. Laws (in any country) haven’t come close to catching up with the technology so I’m of the opinion that it’s too risky to let anyone have my DNA and to store it. There is absolutely no way that I’d consent on someone else’s behalf.

Anyone that has used 23andme dodged a bullet when they went through bankruptcy. That data was almost sold to the highest bidder.

When I was diagnosed with cancer I was given a form to opt into ‘studies’. This form had no details on what was going to be collected, how it was going to be stored, who it was going to be shared with, and how long anything was going to be stored. It didn’t mention DNA at all but I assumed that was going to be part of it.

It’s a shame because I do have a relatively rare cancer, but the risk was not worth it. Hell, I wouldn’t even do a dog DNA test on my mutt because I was concerned about unknown consequences.

So if you can find an English article from a reputable source il read it

it's been in the wind for years and years. Neither sneaky nor underhand.

New approach to organ and tissue donation in England: government response to public consultation
Maybe this but I haven't read it all. We're all signed up anyway.

Doesn’t it matter to you at all that this is clearly what your brother wanted seeing as he had not opted out? I’d be devastated to think that my loved ones would be upset by my choice after death but I’d also be really annoyed if they were trying to blame the NHS for following my wishes.

You’d veto your husbands wishes about what should be done with his own body parts?!?

I know, right?! That is an appalling level of disrespect to the person you have chosen to share your life with.

It’s in English and it’s from the New York Times which is a mainstream outlet.

pp’s worry wasn’t that the UK is like this now, but that it might become it.

My point is not that she’s right, but that you calling her, essentially, a tinfoil conspiracist, isn’t warranted.

You seem to have dismissed this one without reading it, because (you think) her view is stupid. If you are the reasonable rational one, shouldn’t you be reading first, not dismissing first?

Full article here:

https://www.nytimes.com/2025/07/20/us/organ-transplants-donors-alive.html