Facebook Is Urging Members to Add Organ Donor Status | Hacker News Reader

Facebook Is Urging Members to Add Organ Donor Status

nytimes.com

42 pointsmemset66 comments

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.

I assumed they were doing it not for the donors, but for potential recipients. For example, suppose someone you know needs a kidney. You could look and see which of your friends would be willing to donate one, or ask them to post a message to their friends and see which of your friends-of-friends could donate. It's probably a lot more efficient and people are probably far more likely to donate to someone they know personally. And for the recipient it's probably a much faster and easier process than having to wait on a donor list.

Eventually I could see the same with bone marrow and blood type where it's a donation that you can make and keep living, but where millions of people die because there aren't enough donors.

P.S. Go register to be a bone marrow donor: http://marrow.org/Home.aspx

The registrations in question are generally not for living donation. Of course, willingness to donate at all certainly may be an indicator of willingness to participate in living donation.

> 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.

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.

famousactress:

Congrats on the donation. I'm working through the evaluation process myself. Do you have any advice to share?

RE: License sticker, it can't be overridden by family in a first-person consent state; it's the driver's decision to be a donor, and her wishes can't be overruled.

RE: Facebook organ donor status, it's a fantastic way to spread the word about your willingness to be an organ donor, and when no driver's license registration exists, it can help families exercise more accurate substituted judgment.

In general agreement that there's "no better plan than for your family to understand and be on board with your decision." Designating yourself as an organ donor at your nearest BMV makes your decision legally binding.

> RE: License sticker, it can't be overridden by family in a first-person consent state; it's the driver's decision to be a donor, and her wishes can't be overruled.

Even if this is technically true, I'm not sure it's practically always the case. Again, my info is anecdotal and a decade old but I was given the impression that the family is still a part of the conversation, and if they protest the fear of litigation can cause the donation to be avoided. Presumably the hospital and clinical folks involved have a number of decision points for whether or not harvesting will be followed through on. Your family is capable of suing, but you no longer are.

> Congrats on the donation. I'm working through the evaluation process myself. Do you have any advice to share?

Thanks! Congratulations on considering becoming a donor! As for advice.. that's a pretty broad question. It's a pretty long, scary, emotionally draining, and incredibly rewarding process. One of the things that I didn't really understand going in was that it's not a decision you really have to make before you get started (and even if you think you've made a decision, you'll likely find yourself re-making it many more times over)... For me the donor team was amazing at educating and preparing me to make a decision at the end of a lengthy evaluation process rather than the beginning. They do a really great job vetting you physically and emotionally for the process.

If you (or anyone else) has any other questions, definitely feel free to drop me a line. Contact info's in my profile, and I'm happy to answer anything.

Donor status is not a sticker in CA, it's imprinted on the license and IIRC I signed a form affirming donation during the process of getting the license.

Does that mean that you can't get a CA drivers license without giving up your right to your body?

It also helps if you have a will (and your family members know where to find it).

When you're gone it'll be easier for them if you have explicit instructions about what to do. One more data point of "they wanted to donate/not donate their organs" can only make their decision more clear.

Does that mean your family could also override your desire not to donate? I could imagine that being a total fuck you to people who had religious issues and family who didn't like them.

> Living kidney donor here.

The "living" part is redundant.

Haha. You'd think. Many people identify themselves as "Organ Donors" to represent that they've pledged to donate after death. Proper english? Nah, but it's a typical way of putting it. "Living Donation" is a common way to make the distinction. If I'd said 'kidney donor' then some folks might have been under the impression that I'd made such a pledge as opposed to having already donated.

"What You Lose When You Sign That Donor Card" http://online.wsj.com/article/SB1000142405297020460300457726...

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...

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.

In that position a medical staff that is going to do that is as likely to stop treatment anyway at that point, so it is still just a choice between dead and donated or just dead - so it isn't really something that should affect your choice. Heck, a doctor that will ignore reason in that situation might even take organs from non-donors, so not being a registered donor is not going to save you from anything really.

I've been an organ donor since I turned 18. I have increasing concerns about the financial incentives within the industry.

For more detail see Science Journalist Dick Teresi on Book TV discussing "The Undead."

http://www.c-spanvideo.org/program/305225-1

NPR story on the ethics and changing definition of death: http://www.npr.org/blogs/health/2012/03/27/149463045/a-strug...

NPR Fresh Air interview with Dick Teresi, who wrote the WSJ article you linked: http://www.npr.org/2012/03/19/148296627/blurring-the-line-be...

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.

Yes, because them knowing if you're an organ donor actually matters to them in the long run.

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"?

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.

> 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...

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.

Interesting fact, TIL.

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.

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).

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.

> Many advertisers would like to be able to target organ donors.

The horror running thru my mind right now has pretty much made me decide never to donate anything every again.

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.

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!

That's not a problem with organ donation IMO, that is a problem with insurance companies.

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.

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

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.

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

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.

This isn't private medical information. Every single bouncer that I've encountered knows that I'm an organ donor.

I sincerely doubt a single bouncer you've encountered remembers your name, much less your donor status.

That may sound rude, but what I mean is that these bouncers aren't saving and categorizing the information for monetization purposes.

And would you feel the same way if you found out that one of the bouncers has been scanning every drivers license and then selling the extracted data?

On the other hand, while the information on your drivers license is private, the information you choose to put on your public facebook profile inherently ceases to be private.

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.

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.

Though Google Health was discontinued, perhaps this is a test for Facebook Health?

""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.

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?

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.

> 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.

See, this is exactly why this sort of thing should not be on facebook. It will contribute to a decay of relations between people who think someone is a bad person for not donating and someone who thinks there is nothing wrong with not donating.

And? It's not Facebook's job to make people like each other, and I'm sure you won't have to share your donor status if you don't want to. There are plenty of things that people can judge you about on Facebook (sex, race, attractiveness, religious views).

Pazimzadeh:

""The company announced a plan on Tuesday morning to encourage everyone on Facebook to start advertising their donor status on their pages, along with their birth dates and schools""

When facebook has 'a plan' to get you to share this, it gets to a level above simply putting your religious views et al on your FB page.

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.

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.

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.

Sure, but I've the right to think someone who doesn't opt to donate them is something of a dick for indirectly causing needless deaths/suffering.

If Wallmart ran campaings saying that democrats were stupid and Jebuss was our saviour, would you be more or less willing to do business with them?

I think my point is this: how is this any different from religious evangelizing? It's pushing his personal views on other people needlessly. And Zuckerberg using a platform as large as facebook to cajole people into revealing stuff like this to satisfy his personal desire to support some arbitrary cause, it displays a high degree of irresponsibility.

Really? This is what shows Facebook to be irresponsible?

I didn't see many folks on HN complaining that Facebook/Google/etc. shouldn't take an advocacy position on SOPA, so it strikes me as odd how controversial Facebook taking one on organ donation is.

> I didn't see many folks on HN complaining that Facebook/Google/etc. shouldn't take an advocacy position on SOPA, so it strikes me as odd how controversial Facebook taking one on organ donation is.

That's because Facebook and Google had legitimate business interests involved in SOPA. Unless Facebook is getting into the organ donation business, I don't see how your example is relevant.

Organ donation is stupid. It makes you feel good, but how do you prevent your liver from going to an alchoholic who likes to fuck children?

Demand to control your organs and what they are used for.

> Organ donation is stupid. It makes you feel good, but how do you prevent your liver from going to an alchoholic who likes to fuck children?

I'd imagine that particular combination is reasonably rare, and most donation organizations require alcoholics to demonstrate abstinence from alcohol for 6+ months to be eligible.

Ex alchoholic then.

I was personally more concerned with the child-rapist part.

I wasn't, mainly because anyone proven to be one is presumably in jail and thus has a much harder time finding a transplant.

> Organ donation is stupid.

You would not think that is you or someone you cared about needed a new organ.

> how do you prevent your liver from going to an alchoholic who likes to fuck children?

Er, I think the 1 in x00,000 chance of my organs helping someone like that is a risk worth taking for the much much higher chance they will help decent people.

There is nothing that I can do to stop my organs being donated to people who say dickish things on the Internet like you just have either - and if there were processes available by which I could express a preference there are a lot of people who would jump the queue in front of you should you be needing and otherwise next in line at the time.

You could use exactly the same ludicrous argument to "defend" never giving anything to any charity or other cause.

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

I don't disagree with you in the general case, but remember that some people can not donate for medical reasons, or because of significant social pressure. While it is easy for us to say "fuck your family / church / other peer group, they are a silly bunch of idiots / misinformeds / fundies who you are better off without anyway" on the social pressure front it really isn't that easy for people in such a situation. Anything that stigmatizes someone in that position will push them further into the hold of the errant peer group as they'll feel less welcome outside of it.

> Organ donation costs me nothing.

I'm told that the key problem, in this country anyway, is not people who don't want to donate but people who either never state a preference or do so and never explain their wishes to their family (who can and too often do override a donors instructions). Why is hasn't been legislated that the family can't override a person's decision to donate I'm not sure (though I suspect it has something to do with lobbying from certain religious groups).

This is a really bad argument. First of all with the understanding by the public that your Facebook status is not necessarily your organ donor status, there is no stigma.

Then your edit... organ donations are a good thing just not as good as donating food to Africa? I'm sorry Mark Zuckerberg isn't saving the world as fast as you would like him to.

I see an enormous benefit in this - as mentioned even your driver's license doesn't really determine whether or not you donate organs upon death; it's up to your family in the end. Do you know everyone in your family's organ donor status? My hunch is that this is news to a lot of family members upon the death of their loved one.

Because your Facebook profile is public, I think your family is more inclined to believe that it is what you really wanted - whereas your driver's license is a box you check once when you're 16 that you never really think about again.

Under that light every popular behaviour is manipulation

"Oh, everyone is using black t-shirts in my classroom, I don't know why but I better start wearing one"

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