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I have been a registered organ donor (full body, even for research purposes) ever since I could legally do so, which is for almost twenty years now and register

by ninjin 6y ago

I have been a registered organ donor (full body, even for research purposes) ever since I could legally do so, which is for almost twenty years now and registering for donation in every single country I have lived. However, not seeking consent is inexcusable, regardless of how noble the cause. Reading “80% of people in England support organ donation but only 38% have opted in. This means families are often left with a difficult decision when a loved one dies.” [1], it is clear that despite a massive amount of popular support the UK government fails to communicate effectively with its populace and instead of reflecting on its failures it now opts for a nuclear option. What about those without family? What about cases where family can not be contacted in due time? What about cases where the UK bureaucracy “accidentally” approves it? I am not a fan of slippery slope arguments, but here is a case where a good cause is hijacked and corrupted by a political body, leaving someone like me that considered donation to be a no-brainer with a bitter taste in my mouth wondering how best to protest as opting out clearly will not cut it given my moral inclinations. [1]: https://www.gov.uk/government/news/opt-out-organ-donation-max-and-keira-s-bill-passed-into-law https://www.gov.uk/government/news/opt-out-organ-donation-ma...

Crosseye_Jack 6y ago
Yup, completely agree.. > it is clear that despite a massive amount of popular support the UK government fails to communicate effectively with its populace. I have no idea where you get that opinion from... https://www.bbc.co.uk/news/uk-politics-56818750 https://www.bbc.co.uk/news/uk-politics-56818750 (sarcasm tag, just in case :-p)
arp242 6y ago
The biggest problem is people who would consent, but just never bothered filling in the form. I think asking people this question when they apply for a passport would be a good middle ground, and/or maybe on the intake form for their GP, or other kinds of government interactions (voting registration might make sense in the UK specifically). People would still be able to opt-out of choosing at all, but this would catch the large group of people who just never bothered to register.
- onetimemanytime 6y ago
  The government has many ways of getting consent, as you said: driver's licenses, passports, tax, any other interaction with the state...or even mailing a separate form to each and everyone complete with a media campaign. I am no fan of opt out since with the right opt-in they could get enough.
- lawtalkinghuman 6y ago
  > I think asking people this question when they apply for a passport would be a good middle ground This already happens. When you apply for a driving licence, you are asked whether you would like to be put on the donor registry.
Lio 6y ago
I completely agree. I live in the UK, I’ve been a registered organ donor for as long as I can remember. I’ve opted out. I’m not a bag of parts that belongs to an all powerful state.
- kelnos 6y ago
  I think it's a bit much to punish someone in need because you're angry that your government made a bad policy choice.
  - grecht 6y ago
    He’s not punishing someone in need. Nobody has a right to someone else’s organs, however life-saving they may be. The fundamental idea of a ”donation“ is that it’s voluntary.
    - deleted 6y ago
      [deleted]
    - Lio 6y ago
      Thank you that’s far more eloquent than I could have put it.
    - nerdponx 6y ago
      I think it's a bit much to voluntarily withhold lifesaving treatment for someone in need because you're angry that your government made a bad policy choice.
      - Lio 6y ago
        I respect your opinion but I don’t want my family to be pressurised with that view at the time of my death. It’s one thing to ask if they will help someone in need and another to say “we’re doing this are you going to stop us?” By opting out, when I was previously on the donor list, I can spare them that. You might say it will be handled more tactfully but there’s historical precedent that it won’t be. This is an unpopular opinion but I feel compelled to express it; I think this law is wrong. There should have been more debate and finesse used in the drafting of it.
lysium 6y ago
Must feel strange to have opted in many years ago and now it’s “just„ the default. This rule has been decided by elected leaders after many discussions. As a citizen you opt in by default into many things that have been different in the older times. School, health care, the BBC, etc. some of which you even cannot opt out at all. Why should organ donation be treated differently?
- ninjin 6y ago
  No, it does not feel strange that it is the default, as I would love it if more people abided by the same moral code as myself which is why I contribute in a free exchange of ideas and advocate for people to volunteer both in terms of organ and blood donations – the latter I am sadly not allowed to do in the UK due to my type 1 diabetes. It is however strange to me that rather than to communicate clearly with its populace, improve/innovate in terms of recruitment methods, and generally “educate” the populace, a government reaches for an option that I would consider morally dubious and potentially harmful to the overall opinion on organ donation further down the line whenever that inevitable case comes up when a donation is carried out without properly seeking consent. I say inevitable here, because out of the three countries (Sweden, Japan, and the UK) I have lived in long enough to form an opinion, the UK government is by far the worst and its institutions the most poorly managed. As for “elected”, the UK has a very large expat community and many of us are well over the 12-month limit and are being “volunteered” as donors without being close to having the right to vote for the political body that enacted this legislation. Make of that what you will.
forgingahead 6y ago
80% of people in England support organ donation This is nonsense, because this is the standard fallacy of any survey. You take a sample and extrapolate out to the general population. If your sample is not representative, then the statement is false. In fact, I would go so far as to say that we should mandate a law whereby nobody can claim "% of X agree to Y" unless it is specifically stated "% of X surveyed out of a sample size of N agree to Y. Here's a link to the methodology and questions." Organ donation is good and important, but default opt-in is a bad decision, and the reasoning listed for it is worse.
- zimpenfish 6y ago
  "NHSBT carries out biannual attitudinal surveys. The fourth wave in 2017, involved 1499 interviews carried out via online self-completion between the 10th and 21st of April 2017. In this wave, 81% of people supported organ donation in principle." https://www.organdonation.nhs.uk/get-involved/news/hundreds-of-transplants-missed-each-year-because-families-don-t-know-what-relative-wanted/ https://www.organdonation.nhs.uk/get-involved/news/hundreds-... But alas, no methodology and questions on that page.
  - forgingahead 6y ago
    Precisely, this is a bullshit survey with dodgy results. Online self-completion? 1499 participants? If this survey was the basis of this change in law, to be default opt-in, then something very terrible has happened.
- bserge 6y ago
  Seems rather accurate. Most people will assume "organ donor if you're 100% impossible to revive", if that is the case, might as well help someone else.

by ninjin 6y ago

Crosseye_Jack 6y ago

Yup, completely agree.. > it is clear that despite a massive amount of popular support the UK government fails to communicate effectively with its populace. I have no idea where you get that opinion from... https://www.bbc.co.uk/news/uk-politics-56818750 https://www.bbc.co.uk/news/uk-politics-56818750 (sarcasm tag, just in case :-p)

arp242 6y ago

The biggest problem is people who would consent, but just never bothered filling in the form. I think asking people this question when they apply for a passport would be a good middle ground, and/or maybe on the intake form for their GP, or other kinds of government interactions (voting registration might make sense in the UK specifically). People would still be able to opt-out of choosing at all, but this would catch the large group of people who just never bothered to register.

onetimemanytime 6y ago
The government has many ways of getting consent, as you said: driver's licenses, passports, tax, any other interaction with the state...or even mailing a separate form to each and everyone complete with a media campaign. I am no fan of opt out since with the right opt-in they could get enough.
lawtalkinghuman 6y ago
> I think asking people this question when they apply for a passport would be a good middle ground This already happens. When you apply for a driving licence, you are asked whether you would like to be put on the donor registry.

Lio 6y ago

I completely agree. I live in the UK, I’ve been a registered organ donor for as long as I can remember. I’ve opted out. I’m not a bag of parts that belongs to an all powerful state.

kelnos 6y ago
I think it's a bit much to punish someone in need because you're angry that your government made a bad policy choice.
- grecht 6y ago
  He’s not punishing someone in need. Nobody has a right to someone else’s organs, however life-saving they may be. The fundamental idea of a ”donation“ is that it’s voluntary.
  - deleted 6y ago
    [deleted]
  - Lio 6y ago
    Thank you that’s far more eloquent than I could have put it.
  - nerdponx 6y ago
    I think it's a bit much to voluntarily withhold lifesaving treatment for someone in need because you're angry that your government made a bad policy choice.
    - Lio 6y ago
      I respect your opinion but I don’t want my family to be pressurised with that view at the time of my death. It’s one thing to ask if they will help someone in need and another to say “we’re doing this are you going to stop us?” By opting out, when I was previously on the donor list, I can spare them that. You might say it will be handled more tactfully but there’s historical precedent that it won’t be. This is an unpopular opinion but I feel compelled to express it; I think this law is wrong. There should have been more debate and finesse used in the drafting of it.

lysium 6y ago

Must feel strange to have opted in many years ago and now it’s “just„ the default. This rule has been decided by elected leaders after many discussions. As a citizen you opt in by default into many things that have been different in the older times. School, health care, the BBC, etc. some of which you even cannot opt out at all. Why should organ donation be treated differently?

ninjin 6y ago
No, it does not feel strange that it is the default, as I would love it if more people abided by the same moral code as myself which is why I contribute in a free exchange of ideas and advocate for people to volunteer both in terms of organ and blood donations – the latter I am sadly not allowed to do in the UK due to my type 1 diabetes. It is however strange to me that rather than to communicate clearly with its populace, improve/innovate in terms of recruitment methods, and generally “educate” the populace, a government reaches for an option that I would consider morally dubious and potentially harmful to the overall opinion on organ donation further down the line whenever that inevitable case comes up when a donation is carried out without properly seeking consent. I say inevitable here, because out of the three countries (Sweden, Japan, and the UK) I have lived in long enough to form an opinion, the UK government is by far the worst and its institutions the most poorly managed. As for “elected”, the UK has a very large expat community and many of us are well over the 12-month limit and are being “volunteered” as donors without being close to having the right to vote for the political body that enacted this legislation. Make of that what you will.

forgingahead 6y ago

80% of people in England support organ donation This is nonsense, because this is the standard fallacy of any survey. You take a sample and extrapolate out to the general population. If your sample is not representative, then the statement is false. In fact, I would go so far as to say that we should mandate a law whereby nobody can claim "% of X agree to Y" unless it is specifically stated "% of X surveyed out of a sample size of N agree to Y. Here's a link to the methodology and questions." Organ donation is good and important, but default opt-in is a bad decision, and the reasoning listed for it is worse.

zimpenfish 6y ago
"NHSBT carries out biannual attitudinal surveys. The fourth wave in 2017, involved 1499 interviews carried out via online self-completion between the 10th and 21st of April 2017. In this wave, 81% of people supported organ donation in principle." https://www.organdonation.nhs.uk/get-involved/news/hundreds-of-transplants-missed-each-year-because-families-don-t-know-what-relative-wanted/ https://www.organdonation.nhs.uk/get-involved/news/hundreds-... But alas, no methodology and questions on that page.
- forgingahead 6y ago
  Precisely, this is a bullshit survey with dodgy results. Online self-completion? 1499 participants? If this survey was the basis of this change in law, to be default opt-in, then something very terrible has happened.
bserge 6y ago
Seems rather accurate. Most people will assume "organ donor if you're 100% impossible to revive", if that is the case, might as well help someone else.