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Facebook Is Urging Members to Add Organ Donor Status

42 points by memset 14y ago

famousactress 14y ago
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.
- avichal 14y ago
  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 http://marrow.org/Home.aspx
  - famousactress 14y ago
    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.
- mistercow 14y ago
  > 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 14y ago
    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.
- adamclayman 14y ago
  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.
  - famousactress 14y ago
    > 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.
- sureshv 14y ago
  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.
  - tomjen3 14y ago
    Does that mean that you can't get a CA drivers license without giving up your right to your body?
- Splines 14y ago
  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.
- tomjen3 14y ago
  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.
- whackberry 14y ago
  > Living kidney donor here. The "living" part is redundant.
  - famousactress 14y ago
    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.
droithomme 14y ago
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.
- natesm 14y ago
  This isn't private medical information. Every single bouncer that I've encountered knows that I'm an organ donor.
  - thebigshane 14y ago
    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.
- thebigshane 14y ago
  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.
  - 14y ago
whackberry 14y ago
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.
- jonursenbach 14y ago
  Yes, because them knowing if you're an organ donor actually matters to them in the long run.
- ceejayoz 14y ago
  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 14y ago
    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 14y ago
      > 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 14y ago
        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 14y ago
Porter_423 14y ago
I have been signed as an organ donor since I was 18. Not that it will do any good because I have been infected with Hep B, but hey, maybe there will be a Hep B user who can use some of my organs?
horsehead 14y ago
""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 14y ago
  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 14y ago
    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 14y ago
      > 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.
      - horsehead 14y ago
deleted 14y ago
[deleted]
kruipen 14y ago
"What You Lose When You Sign That Donor Card" http://online.wsj.com/article/SB10001424052970204603004577269910906351598.html http://online.wsj.com/article/SB1000142405297020460300457726...
- sologoub 14y ago
  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 14y ago
    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.
  - dspillett 14y ago
    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.
Craiggybear 14y ago
Am I alone in finding this just the teensy bit sinister? Besides, it used to be a private matter.
fuzzylizard 14y ago
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.
brudgers 14y ago
<snark> Adds a whole new layer of meaning to "You are the product. </snark>
olliej 14y ago
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!
- whackberry 14y ago
  That's not a problem with organ donation IMO, that is a problem with insurance companies.
- famousactress 14y ago
  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 14y ago
    I have a very good friend who has been unable to get insurance since donating one of their kidneys.
awj 14y ago
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.

42 points by memset 14y ago

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.

avichal 14y ago
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 http://marrow.org/Home.aspx
- famousactress 14y ago
  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.
mistercow 14y ago
> 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 14y ago
  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.
adamclayman 14y ago
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.
- famousactress 14y ago
  > 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.
sureshv 14y ago
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.
- tomjen3 14y ago
  Does that mean that you can't get a CA drivers license without giving up your right to your body?
Splines 14y ago
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.
tomjen3 14y ago
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.
whackberry 14y ago
> Living kidney donor here. The "living" part is redundant.
- famousactress 14y ago
  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.

droithomme 14y ago

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.

natesm 14y ago
This isn't private medical information. Every single bouncer that I've encountered knows that I'm an organ donor.
- thebigshane 14y ago
  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.
thebigshane 14y ago
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.
- 14y ago

whackberry 14y ago

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.

jonursenbach 14y ago
Yes, because them knowing if you're an organ donor actually matters to them in the long run.
ceejayoz 14y ago
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 14y ago
  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 14y ago
    > 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 14y ago
      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 14y ago

Porter_423 14y ago

I have been signed as an organ donor since I was 18. Not that it will do any good because I have been infected with Hep B, but hey, maybe there will be a Hep B user who can use some of my organs?

horsehead 14y ago

""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 14y ago
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 14y ago
  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 14y ago
    > 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.
    - horsehead 14y ago

deleted 14y ago

[deleted]

kruipen 14y ago

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

sologoub 14y ago
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 14y ago
  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.
- dspillett 14y ago
  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.

Craiggybear 14y ago

Am I alone in finding this just the teensy bit sinister? Besides, it used to be a private matter.

fuzzylizard 14y ago

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.

brudgers 14y ago

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

olliej 14y ago

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!

whackberry 14y ago
That's not a problem with organ donation IMO, that is a problem with insurance companies.
famousactress 14y ago
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 14y ago
  I have a very good friend who has been unable to get insurance since donating one of their kidneys.

awj 14y ago

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.