Organ donation in England has moved to an opt-out system
organdonation.nhs.uk
organdonation.nhs.uk
I haven't come across a friend or family member who knows this is happening today.
Regardless of your view on this, the communication has been poor. It was publicised when Wales moved to opt-out organ donation.
First, there are documented studies showing that known organ donors have a slightly lower survival rate in hospitals than non-donors do. Draw what conclusions from that you will, but some people choose not to be a donor for precisely that reason.
And second, if you have any plans or hopes for cryogenic preservation, that's not particularly compatible with organ donation.
An obvious complication here is that in an opt-in system, people who have more directly faced the possibility of death (extreme sports participants, people with chronic conditions, etc) may be more likely to be donors.
To get numbers with fewer confounding factors, you would need to look at an opt-out system and compare the default opt-in population with a reasonably comparative slice of people who are not automatically donors but have neither intentionally opted out, such as, in the case of the new NHS policy, 'people who have lived in England for less than 12 months before their death'.
> And second, if you have any plans or hopes for cryogenic preservation
If you're planning for cryogenic suspension after death (actually planning for it, not just idly thinking about it), filling out an opt-out form is just a minor footnote compared to the piles of other paperwork needed to set up a legal trust to preserve your body.
I believe they only freeze the head with the brain intact, when one opts for cryonics.
What a loss it would be to come back and be the only one without gills!
I opted in for everything that can be removed while still having a body that is me that people can say goodbye to.
How are targeted ads and Facebook notifications _opt in_, but this isn't??
Give it a day or two, and it too will be widely know that you can opt-out, we're discussing this on the HN front-page afterall, clearly this is no secret.
Give it a generation and no one will care either.
So if families don't want the bodies of their loved ones turned over to the state, tough luck? Why does the state have a greater right to my kin than I?
A citizen recently returned from Liberia is diagnosed with Ebola and dies in the hospital. The family requests a christian burial, but the health protection agency decides against it, as the risk of disease transmission would be significant. Instead the body is treated as a biohazard and cremated, as a precaution to prevent additional deaths.
In this scenario, is it unreasonable that the state have greater right to the body than the next of kin? Should the family have been allowed to proceed with a christian burial, regardless of the potential deaths it might cause?
I think you agree that there are at least some scenarios were the state should be able to seize the rights over a body.
You might draw the line at saving people from Ebola, but I don't think it's entirely unreasonable for others to also include saving people from organ failure in that category.
What does this have to do at all with the topic at hand?
If a person didn't make a choice, their family should have the final say... They certainly have more of a right to the deceased's remains than the state.
To me, the central issue is about choice: Who gets to make choices about my body? Choice matters. The whole point of life is to make choices.
Indeed, "donate". It is immoral and unethical to kill a person with a beating heart and seize organs if that person forgot one of the 1000 various opt-outs of modern society.
No one here wants to forbid opt-in.
> Euthanasia follows a very strict protocol.
Was directly preceded by:
> Killing a person for their organs is illegal, because killing a person is illegal.
Which was a response to:
> It is immoral and unethical to kill a person with a beating heart
[1] https://www.gov.uk/government/publications/pm-letter-to-nati...
Surprise!
I'm trying not to argue for or against opt-in vs opt-out or no choice, that's a fine discussion to have, but this thread was more about notice.
It's more important to tell people when the green and white papers are being read and when the bill is being discussed, and then when the law is made, and there was a lot of publicity then.
The comparison is also moot because there is no opt-out of a law which forces you to wear a mask, or forces you to get vaccinated. There is an opt-out regarding organ donation. A comparison would be, that you'd be forced to wear masks everywhere, and that you'd by default get vaccinated, but you are free to decline (opt-out). Well, vaccinations in The Netherlands already work like this. Your kid gets asked to get a vaccination, and you are free to decline it. You don't have to ask the government for it though. That's opt-out as well.
The key thing that increases the rate of organ donations dramatically (from 30% to almost unviversal between opt-in and opt-out) is that there's a very significant cost to choice. The more choices people have to make, even if they arrive at desired outcomes, hugely diminishes the chance that they do.
And I've been plenty more altruistic when it comes to tissue donations. About 10 years ago I came up as a match to a stranger through the Be The Match Foundation. I went through the whole process and gave that lady bone marrow. So I'm not just a grubby meanie out for a buck. Everyone else in the chain is getting paid, there's no reason the donor should be left empty handed.
There's real money floating about at every step except for the one where they acquire the organ from the deceased's estate. It's a fair point.
Just as it's hard to justify not being willing to donate organs (because "you're dead, what do you care"), it's also hard to justify not paying those who do on the grounds that it's exploitative.
You refuse to save lives at literally no cost to yourself or anyone you know unless someone pays your family off?
> there's no reason the donor should be left empty handed
The donor is dead! Hands don't get any emptier!
> So I'm not just a grubby meanie out for a buck.
Ok, let's see...
Cost to you? 0.
Cost to your family? 0.
Benefit to others? You could save several lives.
Will only do it for? Money.
Yup, no conflict there.
You refuse to save lives
No, I don't think it is. This is a refusal to do something that costs literally nothing purely out of spite. If anything, that negates the good will that might have been earned by the prior act.
"I helped someone once, but I'd like everyone else to just die even though it costs me _nothing_ to save them" is not an admirable stance.
But nobody is forcing you to save lives at no cost to yourself (again, because you'll be dead) -- go ahead and opt out.
If a society no longer believes it requires the willing consent of the individual to engage in these kinds of actions.....well that opens up a few other problems.
So some poor sap who needs an organ is gonna get fucked because your "principled" stance against "the system" will keep you from donating?
You think they'd have a problem with your estate getting money? You think that marginal additional expense would cause them to be like "welp, better just die then."
I wouldn't oppose this "compensate the estate of the donor" idea at all, but to refuse to save lives as a result is insanity, especially because your refusal, and some posts about it on the internet, will amount to 0.
If only participants in the donor program could benefit from the donor program, then people who are ineligible to donate (like under age 18) would be unwilling sacrifices on your altar to Fairness. After all, what are they contributing?
Furthermore, if I'm in need of a vital transplant, there's likely enough systemic damage from the malfunctioning organ that the organs I've got are of questionable use as future transplants.
A "peculiar revenge fetish" is strong words considering your argument is so weak.
> the whole public is only healthier if the WHOLE public is healthier
In general I agree, but this is definitely not an issue with transplants. The demand far exceeds supply, so the question is how you sort the queue.
Of course, refusing to be a potential organ donor also affects the health of the WHOLE public. If you refuse to be a donor, the total number of organs available for transplant is reduced.
> people who are ineligible to donate (like under age 18)
Where did you get the idea that under 18s are not eligible to be donors?
I think everyone would agree, though, that under-18s' views would not make them ineligible as recipients.
> unwilling sacrifices on your altar to Fairness
If it's not them who are getting sacrificed on the Fairness altar, it is someone else who could be a recipient.
Trolling, or did you just not RTFA?
"Anyone can register a decision to become an organ donor after death, there is no age limit."
Apparently not to the statists of HN though!
(As a side mark, a modern Jesus would've been a donor, IMO.)
Yes, he probably would have. But he would not have forced other people to opt-out. This is what people do not understand in this thread.
They snipe, engage in "organ shaming", change lines of argumentation, move goalposts and generally behave like indoctrinated teenagers who picked up some lines in a course.
My father, in his last ~5 years, was on kidney dialysis 3 times a week. It really hurt, seeing those people in pain, but it was the most beautiful department I ever saw of a hospital. Because people leave for quality of life, temporarily better. They come in exhausted. Heck, they often leave exhausted. But next day is gonna be better. There's no dept. which regularly provides a bigger impact on such a time based term.
Now, no my father was too old for a transplantation. He was low on the list. But I have seen young people on that dept. too. Young people of an age where normally their life is flourishing. Young people who, normally, have a full life ahead. Young people of whom my father could've been father, if you get what I mean.
It really requires a lack of empathy, or some kind of convincing of a religion (which cannot be proven true either, and is in contrast with what Jesus would've educated), that you say that after you passed away you don't want your organs to be donated. Well, then have the balls to put in the effort to say so. Because the vast majority of people, are loving and good people.
On top of that, in The Netherlands (where the default was recently changed as well), most people are not even religious anymore (making the default donor more adequate). Plus, its an investment in a life, which should on the long term be good for the economy, as well as the happiness of families.
I don't know what a religious figure has to do with government policy with regards to human organs. At least outside of a theocracy.
The reason it didn't really make much difference in Wales seems to be because the previous system (which until today was also the system in England) was already pretty good.
Under the previous system either you were on the organ donor register (in which case next of kin had no legal option to refuse donation) or next of kin were asked to consent to donation (which most did). (There was also a register for people who definitely didn't want to be donors which also removed the right to consent from next of kin). I'm not sure what the 30% statistic you refer to is, but I'd guess it is the number of people on the "opt-in" register. In reality a larger proportion do have next of kin consent.
The new system, I think, effectively reverses that - there is a register for opting out and if you're on that then next of kin cannot consent. Likewise there is also still an opt-in register which, if you're on it, means next of kin cannot refuse consent. All that's changed, I think, is that if you're not on either register then when doctors do ask next of kin (and if the potential donor is not in an excluded group, eg under 18), if next of kin say "I don't know" then doctors will be able to take that as "yes" not "no".
I do think this is a positive change, because it means next of kin are less likely to be asked put under pressure to answer what is a very difficult and intrusive question which often they haven't previously thought about at the most difficult time. But I wouldn't assume that suddenly donor rates will increase as a result.
This seems to be a good move that could help a ton of people in need, while also giving enough wiggle room to families to deny the donation.
It tends to align nicely with ethical and religious objections as well as moral intuitions, and should expand supply while signaling proper expectations to the demand side, without simply allowing the rich to buy their way to the front of the line.
There are different colors to different approaches, and they're going to have varying degrees of success in different cultures.
I was on the donor register since I turned 18 but my parents or wife can just refuse if that suits them on the day (although I've asked them not to!)
[0]: https://www.organdonation.nhs.uk/register-your-decision/refu...?
I do not believe ends justifies the means. And as always, eventually, while the option might be technically available, just like the TSA opt out, you will be basically shamed into compliance.
https://news.ycombinator.com/item?id=23252408
The next step is shaming those who opt-out. Which will then cement the ownership of the state over your organs.
Edit: and more:
Or hell, at that point, I'd happily make it opt-in.
It's fine to use donor status as a tie-breaker if multiple recipients are in contention.
EDIT: Plus the other reply about children.
In addition to that, there was this:
> Will you automatically take my organs if I don't opt out? No. Your family would always be involved before donation takes place, so it is really important that you choose whether you want to be a donor and discuss what you want to happen with your family, so your decision is clear and they can have peace of mind knowing that your decision is being honoured.[1]
1. https://www.organdonation.nhs.uk/helping-you-to-decide/about...
I'll save the thread for the first time some politician uses the you're not an organ donor ammunition against another. Which will happen. Which didn't happen before.
It's a subtle but profound change, and the legislators clearly knew and sought that.
> Your family would always be involved before donation takes place
That's nice, what will happen if:
a) you don't have close family
b) they can't be contacted fast enough
Because in an opt-in system it's possible to not be an organ donor through oversight, laziness, lack of awareness, or carelessness. In an opt-out system, you have to actively want to not be an organ donor and take steps to ensure that.
I agree that making people who opt-out completely ineligible to receive donations is not right - you should always save a life if it's possible. I also don't see the problem with putting people who opt-out in the back of the line.
None of that fits the definition of "shaming" though, which is what the original poster was concerned about.
They turned something you could do for your fellow citizens, 100% of your own volition, and consciously in 100% of the cases, into an obligation. Which, again, makes your organs, unless you opt-out, property of the state.
I also don't see the problem with putting people who opt-out in the back of the line.
I don't see a problem putting people who pay more taxes in front of the line. They contribute more to the NHS, including making transplants possible. You can even argue than keeping the wealthier alive is more beneficial to the whole system, as, if they die, they'll stop contributing.
This is a terrible idea, of course. How much, in any kind, organs or money, you contribute to the system, shouldn't dictate the attention you get. But it's freaking scary how many in this thread are suggesting exactly that.
Ideally a default opt-in system would increase supply sufficiently that no one in need will go without.
1. https://optn.transplant.hrsa.gov/learn/about-transplantation...
And anti-government in general seems to be stance that often comes with "I don't like it", but without a solution and the only thing I've seen so far is people coming up with a "let's do nothing" alternative. That's not a real alternative at all because it doesn't solve anything. Either bring something else that also works, or accept that the best we can do so far is come up with imperfect solutions.
In the organ donation case, who do you think would "shame you into compliance"? How would anyone else even know? I don't know the organ donation status of anyone else in the world, even my family and close friends, and even those who have died.
I admit to being a white male US citizen who politely requests it using the words "I'd like to opt out" (rather than some vaguer objection) and then waits patiently, not someone who gets angry at the officers. The ground rules aren't the fault of the workers, only any individual bad behavior.
And for a fun alternate strategy: instead of opting out, if you just say "I can't raise my arms above my head," you can skip all of it. You don't even have to explain why because they're not supposed to ask. You'll go through the metal detector and get a hand swab and you're done. Most of the time, I get through to the other side before my bags.
How? TSA security checks happen in public. Opting out of this involves ticking a box on a form and it remains private (I assume).
What is this? In the past five years, I've probably flown 15 times and every time, I've opted out just fine. Just stand there waiting to one side until someone comes to pat you down. The pat down is consistent across airports, and you can usually count on the TSA agent to be courteous and professional. I can't stand the agency or their dictum that they're keeping the skies safe, but individual agents seem to be decent folk.
Never had any feeling of shame from other passengers or TSA agents. Maybe I'm lucky or privileged or something.
But if you don't want to get scanned, tell the agent you want to opt out. You don't have to be a haughty prick about it. Just say, "I want to opt out, please." And when they say, "okay, stand over there," nod and say, "thank you."
The headline should read something like "As of today, all residents of England are organ donors unless they opt out" or "Organ donation law in England has changed to opt-out model."
Health is devolved to the contituent countries here.
I did consider using a raspberry pi plus camera cliped to the waste line and a trained ML model to detect problems with peritoneal dialysis
Regardless, everything is political, if even by its context alone, tech especially.
(I don't know what the law in Scotland, Wales and Northern Ireland is, might be that England is just the last of UKs nations to make opt-out standard)
Scotland is working on it but as far as I'm aware it hasn't completed the required legislative process yet.
NI is still opt-in.
https://www.organdonation.nhs.uk/uk-laws/organ-donation-law-...
Second, it's inappropriate for a state agency to make such personal decisions on behalf of people without asking. Choice matters, and it's each individual's choice to make.
Finally, was this even necessary? Why not simply ask the family at the time of death? If there's no surviving family, THEN the state decides. Last, not first.
Not like every law in the UK gets some kind of referendum first. There are tons of laws which have been introduced which affect me, where I did not get a vote at. That's a problem with our democratic systems, and how the ruler's of one country affect the lives of others (e.g. via threat of war, diseases/epidemics, economy, and so on and so forth).
Some ammunition for those who disagree - organlegging!
As a gay man, I was for some time frustrated with donor exclusion policies related to MSM. However, keep in mind - blood donation is not any benefit to the donor, but rather to the recipient. It is in the best interest of the recipient for blood banks to obtain blood with the lowest risk of infection. For this reason, blood banks exclude a wide variety of donors with elevated risks of various infectious disease (MSM, IV drug user, in the UK in a certain time period, deployed overseas by military, etc depending on the organization). The number of people not excluded by these policies is normally sufficient to meet need, so it makes perfect sense for the blood banks to stick to a policy designed "out of an excess of caution" to avoid blood with higher risk of infectious disease.
Because of improved accuracy and affordability of antibody testing, the exclusion period for MSM was reduced to 12 months (from lifetime). Because of an abnormal blood shortage related to COVID-19, FDA has temporarily reduced the exclusion for MSM and individuals with tattoos/piercings to 3 months. 3 months is actually cutting it somewhat close as far as reliable detection of antibodies, so the period will likely be increased again post-crisis to maintain a wide margin of safety.
Organs are evaluated for suitability based on guidelines that are similar to, and often stricter than, blood donation.
- not my joke, forgot where I saw it
Actual personhood is for the 1%, it would be instructive to know how many of them opt out in the UK.
Then again, the geriatric ruling class who think that they possess other people's bodies can safely do nothing: Their organs are not fit to be harvested anyway.
so in the end the difference is just in theory and law
By that i mean relieving of the pressure to develop truly compatible artificial replacement parts, no matter if they are "grown" on some substrate, or completely mechanical, not having to take immunosupressors afterwards, and so on.
Crude & Backwards.
This mentality has actually helped other countries save more lives by default. While each person still retains the power to opt-out. And yes other countries have done this before the UK. US should do this too!
This kind of sick mentality has crossed the atlantic into america with more "liberals" demanding opt out. What's striking is that the "liberals" who scream about consent are the same ones who want to take it away from individuals. The same ones who scream "my body, my choice" are happy to take that choice from individuals and give it to the state.
So this is no longer organ donation. It's organ confiscation/theft. Of course the state media which rants about china's "organ theft" are all supportive of this.
I don't see how the organ donation affected the care he received. Presumably if organ donation were not an option, the family would have chosen to withdraw life support anyway. Having the option of organ donation merely reduced the emotional pain of it by being able to help people at the same time.
If living in England, would now opt out. The de-facto approach can't be your organs belong to the NHS.
Can your family opt in after your death? I'd say it's a difficult question and obviously made easier by making it opt out system. Anyone objecting has to opt out so majority of people will stay default which improves organ donation rates.
There are many more things than organ removal done to dead bodies that would still kill a mistaken-as-dead person extremely dead, just slightly later in the process.
You could argue, the number is so low the benefits outweighs the costs, but that's not your stance.
Fact, its > 0.
If that's the measure of significance, we should never do anything ever. There are risks in cars, airplanes, shaving getting out of bed, not getting out of bed, eating too much or too little, etc.
People choke on food occasionally. Should we not eat? No, that's silly.
Additionally, I tend to think that doctors do not serve our best interest and instead typically follow common or outdated practices. re: newborn circumcision, which I see as one of the most heinous acts that we still perform in the United States and allow in Europe because of ‘religious tolerance’
I can anticipate being called an antivaxxer, so I want to answer that as well. I’m not an antivaxxer by any means, but I also don’t think pumping your child with at least 7 doses of pathogens before they’re 6 months out isn’t a good thing either. I’d prefer to wait until they’re a bit older or to have longer wait times between each shot. I think this is something that also doesn’t get enough discourse because we hail doctors as all-knowing rather than viewing them with the same skepticism as other fields.
Just as a side note, those who score highest on graduate exams such as the GRE are the physicists and mathematicians. Doctors are quite low. It may suggest something about their innate ability, yet we still lionize them.
I am yet to hear of someone surviving after their heart or liver was removed for donation from their body. And I am also yet to hear of anyone donating their organs in hopes of enhancing their life experience.
In addition, my understanding is that organ transplants require a physically healthy donor for viable organs (heart beating, oxygen reaching organs), so most donors don't look or act dead until their organs are removed.
A lot of the work that Dr. Jack Kevorkian did was on research to decide when people had actually died (he was later involved in assisted-suicide to establish legal precedent for suicides.)
The US Army declined his suggestion to do blood donations from dead soldiers in combat, so it's interesting that a government agency is not in favor of such transplants. Something to think about:
https://en.wikipedia.org/wiki/Jack_Kevorkian
So this area is far from black and white, and I fail to understand why people would be opted-in before any of these questions have been addressed.
(In the USA, harvested patients don't get paid for their organs, but my understanding is that the hospital and doctors are paid, so large amounts of money are transacted, and we know what that would lead to.)
Well, obviously, yes, because even before any ethical concerns, that's wildly impractical in every possible sense. Soldiers are already carrying around 40-60 pounds of gear and now you want them to transport blood transfusion equipment, too?
[0] https://www.amazon.com/The-Undead-Dick-Teresi-audiobook/dp/B...
Thus I will opt out.
Moreover, the linked website's claim of universal religious support for organ donation is very suspicious. It relies on opinionated interpretation of religious texts and cherry picked quotes of support from random individuals that they've propped up as authoritative representatives of religions, when that is not really the case in reality. Religious ritualistic practices and interpretations of texts vary and there will be many for whom this permissive assumption of the state's right to an individual's organs will be a violation of their beliefs.
https://www.cbsnews.com/news/hospital-errors-lead-to-dead-pa...
I wonder though if a change like this would reduce those cases in the long term though. If there are more organs available, wouldn't there be less pressure to harvest from any particular person?
Moving out is the best opt-out ever. (until pandemic hits and you can't move out)
Nonsense. Absolute and utter nonsense.
There's an opt-out.
That was the spammer's excuse 10 years ago.
As long as the opt-out is respected I also don't see what's totalitarian about it.
You're picking one horror story because it fits your parameters, and pretending it's something to worry about. It's not. Cheers.
Unlike this state mandated organ seizure, if you haven't heard the news and opt-out of yet another thing.