

Facebook Is Urging Members to Add Organ Donor Status - memset
http://www.nytimes.com/2012/05/01/technology/facebook-urges-members-to-add-organ-donor-status.html?_r=2&smid=tw-nytimes&seid=auto

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famousactress
Living kidney donor here.

Donor status on Fb sounds like a great idea for raising awareness and
encouraging others to think and talk about organ donation (living and non).
That said, during my process I talked to a number of professionals in the
field and repeatedly got the same feedback: The sticker on your license (and
likely the flag on your Fb profile) doesn't mean much in the end. If you've
got living family, they'll be asked and their answer is going to hold weight.
The most important thing you can do as someone who wants to be a donor is to
make sure you're family is aware of your decision and willing to give the go
ahead if that time comes.

Registrations like the one mentioned in the article seem like an awesome idea,
but I'd still be interested to know how often they're contested by family.
Bottom line is that there's probably no better plan than for your family to
understand and be on board with your decision.

~~~
mistercow
> The sticker on your license (and likely the flag on your Fb profile) doesn't
> mean much in the end.

The flag on your FB profile will likely mean nothing officially, but
practically it will mean more than the driver's license because your family is
more likely to see it and be aware of it.

~~~
famousactress
Totally. I think it's way more public and visible... That said, this is a
decision that family has to make at an incredibly stressful, confusing, and
emotional time. It may be something that you've thought a lot about, but if
family members haven't had a chance to think through this scenario it can be a
really disarming and terrifying decision to be presented with... especially if
it's not one that they'd ever make for themselves.

Some of the folks I talked to touched on anecdotes where even though the
family was 'aware', there's still a lot of potential for hesitation if they're
not absolutely sure that it's something you've thought about and have
conviction behind.

I think stickers and Fb flags are great, but these conversations are really
the best way to ensure your decision is carried out.. and they have the added
benefit of really making people internalize and think about organ donation
very seriously.

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kruipen
"What You Lose When You Sign That Donor Card"
[http://online.wsj.com/article/SB1000142405297020460300457726...](http://online.wsj.com/article/SB10001424052970204603004577269910906351598.html)

~~~
sologoub
This is the part that terrified me: "Here's the weird part. If you fail the
apnea test, your respirator is reconnected. You will begin to breathe again,
your heart pumping blood, keeping the organs fresh. Doctors like to say that,
at this point, the "person" has departed the body. You will now be called a
BHC, or beating-heart cadaver."

"What if there is sound evidence that you are alive after being declared brain
dead? In a 1999 article in the peer-reviewed journal Anesthesiology, Gail A.
Van Norman, a professor of anesthesiology at the University of Washington,
reported a case in which a 30-year-old patient with severe head trauma began
breathing spontaneously after being declared brain dead. The physicians said
that, because there was no chance of recovery, he could still be considered
dead. The harvest proceeded over the objections of the anesthesiologist, who
saw the donor move, and then react to the scalpel with hypertension."

While the donation of organs is a noble cause, articles like that make me
question of under this noble cause, so seriously questionable behaviors have
sprung up. In the end, this seems like a deeply personal decision and trying
to pressure someone into making it is very questionable, but then again, it
wouldn't be the first or last time another human has tried to impose their
ethics on to someone else...

~~~
pazimzadeh
That article has a lot of "what if" in order to "raise questions" but seems to
mainly rely on people's lack of scientific knowledge to make its point. Just
because the body moved or had hypertension after a scalpel cut does not mean
it was not dead.

I'm not saying I know which one it was, but I trust a doctor more than Dick
Teresi for the Wall Street Journal.

------
whackberry
Google and Facebook are the kings of plausible deniability.

Everything they do is meant to collect personal data, but they always have the
perfect excuse for doing it.

~~~
ceejayoz
How do you propose Google or Facebook would profit from knowing you're an
organ donor, beyond simply "our employees might need an organ someday"?

~~~
WiseWeasel
That _is_ actually likely to be a valuable bit of demographic data. It's one
of the rare pieces of information that indicates altruism, along with
charitable giving. Many advertisers would like to be able to target organ
donors.

~~~
whackberry
> It's one of the rare pieces of information that indicates altruism, along
> with charitable giving.

Depending on your region, being a registered organ donor in fact says a lot
about your previous medical history. HIV status, etc...

~~~
makomk
In Canada it also apparently used to potentially say something about your
sexual orientation as well, at least if you were male - gay men were barred
from donating organs a few years ago.

~~~
whackberry
Interesting fact, TIL.

~~~
tomjen3
That is the case in many countryis with blood. The Danish blood bank ran into
an issue a few years ago where they warned of a possible blood shortage a few
years ago and they then turned down blood from (healthy) male gays.

You can't donate if you had sex with a single male 30 years ago, but I can
sleep with all the females I want and still donate.

~~~
dspillett
Those rules came in in the early 80s when we barely had a clue about HIV/AIDS
and one of the few things that were clear was that gay men were a higher risk
group (though we didn't know why).

Given there are no doubt reliable tests to find and discard blood carrying
such things, I'd be interested to know why the rules have not been removed and
such tests put in place (it could be that governments don't want a public
argument with certain narrow minded loud voiced religious groups, or it could
be that the tests are just too time consuming or otherwise expensive).

~~~
tomjen3
Religious groups don't have much power here and the rules still exist.

But blood donation rules are fucked. I am banned for life from donating blood
in the US -- because I spend more the 3 (or is it 5) years in Europe (I was
born here). Apparently every european is considered so likely to have mad cow
disease that you are better of not getting our blood at all.

Like I said, the rules are ridiculous.

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fuzzylizard
Whether this is a good idea or not, I have no idea. I is an interesting social
experiment and it will be interesting to see the results.

But, does anyone else see a Criminal Minds episode in this? Lonely road;
quiet, dark house; dank alley; victims are found one after another, the only
thing tying them all together is their organ donor status on their facebook
page. The villain turns out be the husband of someone who died waiting for a
kidney, lung, or heart transplant.

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olliej
The problem with organ donation is that insurance companies consider missing
organs to be a pre-existing condition, and will reject you because of it. Go
private health care!

~~~
famousactress
Do you have evidence of this? It sounds like bullshit. In addition to not
being denied insurance in the ten years since donating an organ, it's also the
case that just to become a living donor the battery of tests you end up going
through for approval essentially ensures that you're statistically healthy
enough to be an amazing bet from the point of view of the insurance company.

~~~
olliej
I have a very good friend who has been unable to get insurance since donating
one of their kidneys.

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awj
Well, that's certainly something I won't be participating in.

Without debating the organ donation issue (which is complicated beyond what
most forums can effectively discuss), this is blatantly using Facebook as
Zuckerberg's personal platform for social change and a lot of personal
information can be inferred from the response to this question. I find neither
of those facts acceptable.

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brudgers
<snark> Adds a whole new layer of meaning to "You are the product. </snark>

------
droithomme
Interesting to have a corporation bully people into revealing private medical
information in this way.

Even more relevant and appropriate for bragging rights than a far away future
intention to donate organs would be present organ donations already done - of
a kidney or bone marrow for example. Why not add that as well?

Along these lines they should consider adding lines for other medical tidbits
that are elements of pride and identity for many people. For example, the
number of abortions, if you're a cancer survivor, addiction status, ADHD
medications, and any other interesting bits they think your friends should be
aware of and might bond with you over. Some of of these tidbits might possibly
even be monetizable when sold to insurance companies or others interested in
such details, that's just a bonus.

~~~
thebigshane
Downvoters: Do you think his prediction of Facebook adding more medical
information to profiles is really off-base?

I'm sure there are multiple motives going on here: one may be altruistic, but
I can hear the advertisers and insurance companies salivating at the idea of
these new categories of information.

~~~
drivingmenuts
I don't mind my friends and relatives knowing, but somehow, I am unable to
countenance the idea of some corporate somewhere knowing this level of detail
about me.

------
horsehead
""a move that it hopes will create peer pressure to nudge more people to add
their names to the rolls of registered organ donors.

It is a rare foray by Facebook into social engineering from social networking,
and one with a potentially profound effect, according to experts in the field
of organ donation.""

You say social engineering. I say manipulating people to do something you
think they should. I seriously wonder why I still use facebook.

~~~
ceejayoz
Of all the things Facebook does that are sleazy, encouraging the saving of
lives in a way that has zero downside is the thing that gets you up in arms?

~~~
horsehead
it's not so much that. It's the stigmatizing that they're doing -- as if
you're somehow 'bad' by not being an organ donor.

Yes it's admirable, but it's the principle that gets me more than the details
of this. While organ donation is a good thing, where does it stop after this?

edit: for example, why doesn't he do some social engineering to help all the
starving children in third world countries? I don't have figures, but I'd like
to see the numbers of people who die because there was no organ available to
them compared to the number of children who die because they don't have food.

~~~
ceejayoz
> it's not so much that. It's the stigmatizing that they're doing -- as if
> you're somehow 'bad' by not being an organ donor.

Well, you are, if you ask me. Not donating is tremendously selfish, I'd say.

> edit: for example, why doesn't he do some social engineering to help all the
> starving children in third world countries?

Organ donation costs me nothing. It is an act that has zero downside to me.
Donating food has at least some downside, as it deprives me of something
(money or food) I would have had.

~~~
drivingmenuts
Selfish, maybe, but that's still a very personal choice and one that doesn't
cause any direct harm, if you choose not to.

We are all well within our rights not to donate organs.

~~~
pazimzadeh
How do you mean? There is a shortage of organs for transplants. If you don't
donate, another person will die. That's pretty direct.

~~~
drivingmenuts
But I am not the _cause_ of that person's death. The cause of their death will
likely be disease or accident or some other thing unrelated to my person.
Learn the difference between direct and indirect.

