
Organ donation becomes opt-out in France - MaysonL
https://www.theguardian.com/society/2017/jan/02/france-organ-donation-law
======
Freak_NL
In The Netherlands a similar bill has been submitted to our upper house for
approval last September. I hope it passes, although there is vocal opposition
against this issue.

From a society's perspective opt-out makes perfect sense. If you are really
against organ donation, just register yourself as such; it takes all of five
minutes. I don't even care why you would want to keep all your organs after
death, it's not my call.

The reason to go for opt-out rather than opt-in is because a lot of people
simply don't register their preference, _even when they are, rationally
speaking, all for organ donation_ — that's the critical point. Thinking about
your own mortality sucks, and visiting the website where you can register
yourself as a donor (necessary for the opt-in model) is something that hovers
somewhere on the eternal to-do list, but somehow they never get around to it.
Because it is never you that suddenly dies in a freak accident.

If you are against organ donation, you will however register that preference
the moment such a bill is passed into law.

That's it. Statistics and psychology (and saving lives) are the reason states
consider opt-out over opt-in. The state isn't invading your corporeal
sovereignty, you are not being harvested for organs the moment you enter a
hospital (well, not in France or The Netherlands at least), and you still get
to decide.

~~~
Mc_Big_G
_" I don't even care why you would want to keep all your organs after death"_

I don't, but I also want every measure to be taken to ensure I survive. With
the corruption and dishonesty we've seen from the police all the way to the
highest levels of government, I no longer believe my best interests will be
honored. I used to be a donor, but I've lost faith in our institutions,
especially when it comes to Healthcare. Do you trust insurance companies? If
so, why?

~~~
pzh
Why is this downvoted? I think it's a valid concern.

How do you know that in some small village somewhere the local government
isn't so corrupt as to make sure the organ donation process gets 'speeded up'
to serve the need of some wealthy/influential organ recipient in waiting?

~~~
raesene9
I didn't downvote, but I've got to say I don't think it is a valid concern.

If you honestly have so little faith in local government that you believe they
would change the care options of a patient to "speed up" organ donation, what
makes you think they wouldn't disregard the patients preferences on organ
donation and just remove the relavent item after death and before handing the
body over to the family?

~~~
pzh
Aren't you effectively saying that it's pointless to lock your house, because
if a thief is immoral enough to enter and steal your TV, they'd be immoral
enough to break the lock as well?

~~~
raesene9
nope I'm saying that one is as easy or indeed easier than another. Once you
assume an immoral authority has control over patient care it's frankly easier
and less risky for them just to remove organs without patient consent after
death, than deliberately give poor care to hasten the patient's demise.

~~~
jlg23
a) My patient might be dead by the time the donor dies, less profit for me.

b) "deliberately poor care" or "generous amounts of painkillers"? The
alternative phrasing is exactly how assisted suicide works in societies where
it is not legal.

And here some story reported in 2012, in Germany (English article, though):
[http://www.spiegel.de/international/germany/organ-
transplant...](http://www.spiegel.de/international/germany/organ-transplant-
scandal-shocks-germany-a-848016.html)

~~~
alendit
Did you read the article? Patients were pushed to the top of the list, no
donor was given subpar treatment, that would be murder.

------
pkaye
One never knows that they might eventually need an organ transplant. Two years
ago I was feeling reasonably healthy for my age but internally a uncommon auto
immune disease are fighting a battle and my kidney were losing it with hardly
any symptoms of the damage. In a manner of months I had some joint pains that
wouldn't go away and my weight started ballooning. I went to the doctor and he
didn't take it seriously until tests indicated that I was stage 4 kidney
disease. Generally at this point is it too late and kidney function may slowly
degrade further over time.

I found my diagnosis at that point and even if discovered early the auto
immune disease I have still doesn't have a cure to stop it other than treat
the symptoms. My short term hopes are to stay healthy as possible and when
required switch to dialysis and try to live a long normal life until I get a
transplant. But in most places in the US, a kidney transplant takes 3-5 years
on a list due to organ shortage. In many parts of the EU the wait is just
under a year. Also organ transplant is not a cure in any way since one needs a
lifetime of drugs to keeps prevent rejection but it is better than dialysis in
trying to live a normal life.

On the question of organ donation being opt-in/out I certainly would like a
shorter wait time but I would like people to be informed as much as possible
to make a decision. I think much of it is people believing it will never
happen to them that they need it. But just remember that on a roll of dice
things can change for you without even knowing it.

------
pd0wm
The title of the article is misleading. France has had an opt-out sytem for
organ donation for years. The only thing that has changed is that it is no
longer required to consult relatives for a second opinion.

> Until 1 January, when the legislation took effect, unless the person who had
> died had previously expressed a clear wish for or against donation, doctors
> were required to consult relatives who, in almost a third of cases, refused.

~~~
jobigoud
So it wasn't really "opt-out" nor "opt-in" if the default case was that you
had to consult relatives.

~~~
catwell
You had to consult relatives and ask them: "do you know if the deceased was
opposed to this"? This meant the way to opt out was to tell your relatives. It
has been the case for 40 years. [1]

There were posters in most hospital waiting rooms telling people to do this
(which I found creepy as I found myself there a few months ago, waiting for
news on whether a relative would live or die, by the way). See [2] for an
example.

Now the only way to opt out is to send snail mail (!) to be added to a
nationwide file. It should become possible to do it over the Internet someday.

Fun fact - we have a pin card that has been designed to store that information
since 2006, but the feature has never been made accessible to the public. [3]

[1] (fr) [http://www.lemonde.fr/les-
decodeurs/article/2016/12/22/don-d...](http://www.lemonde.fr/les-
decodeurs/article/2016/12/22/don-d-organe-quarante-ans-apres-la-loi-sur-le-
consentement-presume-ou-en-est-on_5053129_4355770.html)

[2] (fr) [http://fr.slideshare.net/amfe/guide-du-don-
dorganes-2015-de-...](http://fr.slideshare.net/amfe/guide-du-don-
dorganes-2015-de-lagence-de-biomdecine)

[3] (fr) [https://www.agence-biomedecine.fr/Carte-Vitale-2-et-don-d-
or...](https://www.agence-biomedecine.fr/Carte-Vitale-2-et-don-d-
organes?lang=fr)

~~~
jobigoud
Oh, so instead of saying "I don't know" to trigger the default, people were
possibly lying and taking a decision on behalf of their deceased relative…

~~~
Tinyyy
Lying is a rather strong word, perhaps they thought that their relative was
inclined to refuse donation. And default has no meaning here because they know
that their answer decides the outcome; letting it fall to a “default” option
decided by others seems to be rather irresponsible to the deceased relative.

~~~
loup-vaillant
Death is a rather traumatic event. Many people won't think straight in this
situation. Some may just blurt out "no" because they're in no state to respond
to any kind of request.

------
nmc
The article is entirely wrong.

Organ donation has been opt-out in France since the first law on the subject
in 1976.

The only new thing in 2017 is that you can now easily opt-out online.

------
Nexxxeh
Wales has relatively recently moved to "opt-out". It appears to have already
made a huge positive difference.

I was disgusted at how many people opted out though. The Welsh aren't
generally thought of as selfish.

I had opted in long before the change, why would I hoard my meat bits when I
die?

I should stress, in Wales at least, it is still worth explicitly opting in.
The presumed consent only applies if you die in Wales. If you died on the
wrong side of the Severn, like a trip to Cribbs Causeway over the border in
England had a tragic twist, the presumed consent doesn't apply.

------
ghaff
Defaults are an extremely powerful policy lever--sometimes worryingly
powerful.

FWIW, Richard Thaler, who played a big role in creating the field of
behavioral economics, has argued in favor of "mandated choice" for organ
donations at the time people renew their drivers license [1]. His concern with
default opt-in, as I recall from one of his books, is that defaults are so
powerful that they may not really create implied consent.

[1][http://www.nytimes.com/2009/09/27/business/economy/27view.ht...](http://www.nytimes.com/2009/09/27/business/economy/27view.html)

~~~
Freak_NL
Mandated choice sounds like a very useful mechanism, but I would fear that for
many people being confronted with this choice when you are renewing your
driver's licence means defaulting for the 'safe' option of non-donor.

The tricky thing about organ donation is that the default choice tends to be
'postpone deciding'. For society at large this is harmful. Hypothetically, if
you could ask someone's ghost after they've died on the hospital table, I bet
most people would gladly donate their organs (perhaps with the occasional “Oh
but can you please leave my face untouched?” thrown in) after accepting their
untimely demise. But we can't. So with opt-in and a with a mandated binary
choice at a set time you go for the safe option, which is 'non-donor' (“I'll
change it after I've thought it through.”).

~~~
michaelt

      Hypothetically, if you could ask someone's ghost [...]
      I bet most people would gladly donate their organs
    

Don't you think it's a bit of a stretch to imagine you know someone's
preferences better than they do when they've _explicitly stated_ their
preferences through a forced choice mechanism?

------
JoeAltmaier
Its an emotional subject. Doesn't it boil down to "I'm uneasy about thinking
about what happens to my body after I'm dead" versus "Don't let living people
die". One is, in my opinion, a much stronger argument.

~~~
jhg7877
That's not what the debate is. It's about the dark pattern of opt-out in which
other people make the choice for you and being forced to opt out of it. Many
people, myself included, are for organ donation but oppose opt-out as
unethical and dangerous.

~~~
JoeAltmaier
There's an equally compelling argument that 'opt-in' is a dark pattern, that
'makes the choice for you' and forces you to do paperwork. Its equally
troubling to imagine your organs _go to waste_ after you die because of
incomplete paperwork. Why are not those concerned about that, given equal
time?

------
cpr
The real and serious problem with this is that the organ donation process
biases the medical profession into declaring you "dead" as soon as possible,
and ideally even sooner, so that your organs are as fresh as possible.

~~~
mikeash
Does this actually happen? I see this concern mentioned several times here,
but always as a hypothetical. Has there been any research done to see if
donors do indeed receive inferior care?

~~~
ta1029384756
How could you gather this data, and who could publish the study and be trusted
by the public?

~~~
mikeash
Seems like it would be straightforward to compare care and outcomes between
donors and non-donors and see how they differ.

In any case, I'm not the one making the claim, so I'm not the one who has to
back it up.

------
sdfhbdf
It's been like that in Poland for many years now, but in reality this doesn't
really work since families are always asked before the donation and they
usually refuse and the law doesn't really expect the doctors to ask the
families but they still do it anyway, just to be on the safe side and not have
to deal with repercussions like the family suing the doctor.

~~~
x1798DE
This seems like a perfectly sensible thing to do, honestly. If I were
designing the system, I'd say that the default option is opt-out and that if
you make an affirmative choice (yes or no) during your lifetime, that choice
overrides your family's wishes, but otherwise your family gets a "veto" over
your organ donation.

The whole problem that "opt-in" organ donation is that most people just do
whatever the default is and no actual human decisionmaking takes place, so
it's preferable to have sensible defaults. If a human is overriding the
default, that's the _desired behavior_.

~~~
jhasse
Why wouldn't you want to donate your organs though? And especially: Why
wouldn't the family want to donate the organs of their relative?

~~~
jobigoud
That's a different issue. Some people are religious or superstitious, and I
guess there are religions against organ donation.

~~~
ryanlol
Why can't we expect people to have reasonable reasons for their refusal?

~~~
BugsJustFindMe
Reasonable reasons unrelated to superstition? Name one?

~~~
ryanlol
I can't think of any, but I do strongly believe that anyone who can come up
with one should be allowed to keep their organs :)

------
phkahler
The problem is verification. As things are today, you have to verify that a
person has registered as a donor. If they are and you can't confirm it then
nothing happens as far as that person is concerned. In the new system if you
can't confirm someone is a non-donor they'll take all your usable parts.

I propose a compromise where every person is "supposed" to register their
preference one way or the other. That would probably increase the number of
registered donors, and if you can't find someone in the database you don't
assume a default choice for them.

------
Insanity
This has been the case in Belgium for about 20 years. The law does make it
possible for the family to _refuse_ in case they have objections against it.

It is the default, but the family is still considered.

And a link, in Dutch. I'm not sure how well you'd fare with google translate
so sorry for that: [http://reborntobealive.be/orgaandonatie/belgische-
wetgeving-...](http://reborntobealive.be/orgaandonatie/belgische-wetgeving-
orgaandonatie/)

~~~
the_duke
It's opt-out in Austria as well.

You can register your opt-out with a simple signed letter to the government.

I don't have the time to dig up the statistics right now, but the percentage
of donors is considerably higher than, for example, in Germany, which is opt-
in.

~~~
basicplus2
You don't have to be brain dead in Australia anymore either.. only your heart
has to stop.

"Identify cessation of circulation (absence of circulation for a period of not
less than 2 minutes and not more than 5 minutes)"

While the plain English information sheet cherry picks some severe cases..

"Generally they are patients with very severe brain injury from which they
cannot recover. Less often, they are patients with terminal heart or lung
failure, or have suffered a very severe spinal injury where they cannot
breathe unassisted"

The actual protocol says...

"resuscitative attempts are either contraindicated on medical grounds, given
that it has been determined that meaningful recovery of the patient is
unlikely, or the patient (or the person with legal authority to make his or
her medical decisions) has decided that resuscitative measures would be unduly
burdensome."

Which pretty much gives the green light no matter what.

[http://www.donatelife.gov.au/national-protocol-donation-
and-...](http://www.donatelife.gov.au/national-protocol-donation-and-cardiac-
death)

~~~
the_duke
You are talking about AustraLIA, while I was talking about Austria.

If I got a Euro for ever time someone made that mistake... ;)

~~~
basicplus2
Oops sorry! It was late..:)

------
WalterBright
From an episode of "House", why not expand the pool of donors by accepting
organs from old people or otherwise more marginal organs? If it's a matter of
life & death for the recipient, wouldn't a more marginal organ be better than
none?

------
eternalban
[https://youtu.be/aclS1pGHp8o](https://youtu.be/aclS1pGHp8o) [Monty Python's
take on this question]

------
df3
Many will benefit from this change, but France should not force anyone to opt
into what is a very personal and emotional decision. The government should not
tell you what to do with your body even after death.

The online opt-out registry and opt-out form options will give people a chance
to express their wishes to avoid donation. However, there will be a sizable
portion of the population who do not fill these out due to ignorance,
especially in the less advantaged fringes of society. What is the government
going to do to make sure everyone knows about the change and the ability to
opt-out?

~~~
d4adb33f
You do not need your body after you are dead. This is good for society.

If anything the opt out should be further restricted. You may opt out, but
you'd need a valid reason. Any held superstition should not be grounds.

~~~
afastow
> If anything the opt out should be further restricted. You may opt out, but
> you'd need a valid reason. Any held superstition should not be grounds.

This is insane and a reason why some people would be against "opt-in by
default" is fear of it expanding into something draconian like you are
describing.

You don't respect religious beliefs(which you were clearly referring to
derisively as "superstition"). Fine. But please don't advocate for your
contempt to be codified into laws that discriminate against people different
than you.

I'm all for making organ donation opt-in by default since I believe that
accurately reflects most people's actual preference. But I'm not for tricking
or forcing anyone into it. The default should be made clear and people should
be able to easily opt-out for any reason they see fit or even no reason at
all.

~~~
loup-vaillant
This is a thorny issue.

On the one hand, we're weighting supernatural beliefs against real life-saving
treatments. On the other hand, the backlash we can get from some religious
people is just as real. God will never smite me, but his followers might.

More generally, I'd say this is not the right way to combat religion. There
are reasons why we still have religions, some of them worth copying (helping
your neighbour and such), some of them worth combating (such as fear and
poverty). Going directly against he will of religious people is only going to
get ugly.

~~~
d4adb33f
Appeasement does not (always|ever) lead to progress.

In civilized countries secular law trumps religious law.

~~~
loup-vaillant
As they should. I'd just rather _convince_ people out of religion and avoid
antagonising them, if possible.

~~~
d4adb33f
> if possible.

Aye, there's the rub.

------
Randgalt
This is appalling. Are not our bodies our own? The remains of our bodies
should belong to whomever we will it to.

~~~
jhg7877
I carry an organ donation card and have taken part in organ donation signup
drives. I find this appalling as well. It's equivalent to the government
giving itself ownership of your body. How can't it change the relationship
between patients and doctors? It's insane. People have also quickly forgotten
the organ theft scandals of the last 40 years where hospitals stole organs
from bodies for research and profit.

~~~
orf
> People have also quickly forgotten the organ theft scandals of the last 40
> years where hospitals stole organs from bodies for research and profit.

Which they wouldn't have done if there was a ready supply of donated organs,
instead of a critical shortage.

~~~
jhg7877
I suggest you do some research about the organ retention scandals in the UK
and Ireland and how it affected grieving families. It's horrifying and would
make any rational person seriosuly question opt-out organ donation given the
unethical behaviour of hospitals for decades.

"According to Colgan, babies' bodies were filled with sand, so they would be
the correct weight when loved ones held them for the last time. Pituitary
glands of thousands of children (and some adults) were sold to pharmaceutical
companies unbeknownst to their families."[1]

[1] [http://www.independent.ie/entertainment/books/the-scandal-
of...](http://www.independent.ie/entertainment/books/the-scandal-of-organ-
retention-26558440.html)

[2]
[https://en.wikipedia.org/wiki/Alder_Hey_organs_scandal](https://en.wikipedia.org/wiki/Alder_Hey_organs_scandal)

~~~
orf
I agree, that does sound pretty bad. But I fail to see how it relates in any
way to organ donation.

> The Alder Hey organs scandal involved the unauthorised removal, retention,
> and disposal of human tissue

The key word is _unauthorised_.

------
Cozumel
There's an angle to organ transplants that I've not heard discussed. We are
who we are to a certain extent through DNA, when you receive a transplant
you're receiving someone else's DNA, you receive all their genetic
dispositions.

There's lots of cases of people undergoing personality changes after a
transplant, as far as I know no-one has ever studied this in depth but it's
real.

Can An Organ Transplant Change A Recipient's Personality? Cell Memory Theory
Affirms 'Yes' \- [http://www.medicaldaily.com/can-organ-transplant-change-
reci...](http://www.medicaldaily.com/can-organ-transplant-change-recipients-
personality-cell-memory-theory-affirms-yes-247498)

This study confirms behavioural changes but puts it down to 'fantasy' \-
[https://www.ncbi.nlm.nih.gov/pubmed/1299456](https://www.ncbi.nlm.nih.gov/pubmed/1299456)

Another paper - [http://www.namahjournal.com/doc/Actual/Memory-
transference-i...](http://www.namahjournal.com/doc/Actual/Memory-transference-
in-organ-transplant-recipients-vol-19-iss-1.html)

Transplants don't save lives, they violate it in the worst possible way. And
allowing the state to harvest your organs without your consent is bad.

The alternative is regrowing the needed organ from your own cells and using
that, there's already been some progress growing them from stem cells.

~~~
arjie
> Transplants don't save lives, they violate it in the worst possible way.

How? The recipient is consenting to receive. As for the donor, here's a tale
about Diogenes of Sinope:

> When asked how he wished to be buried, he left instructions to be thrown
> outside the city wall so wild animals could feast on his body. When asked if
> he minded this, he said, "Not at all, as long as you provide me with a stick
> to chase the creatures away!" When asked how he could use the stick since he
> would lack awareness, he replied "If I lack awareness, then why should I
> care what happens to me when I am dead?"

