Why not make organ donation opt-out?

An organ transplant — especially when it’s a repeat job — is never a simple operation, but all things considered, Annika seems to be doing pretty well.  I’m still keeping her and her family in my thoughts and prayers.

On one of the posts about her (not here, on another blog), someone posted a comment urging people to join something called LifeSharers.  Their stated goal is to increase the number of organs donated and reward the people who choose to donate, by giving people who commit to donate organs higher priority to receive organs themselves.  They’re doing this by creating a free membership organization, where the condition to belong is that you commit to a) donating your organs and b) specifying that other members should get priority for those organs.

There’s an interesting logic here.  It gets around the primary objection to paying people for their organs (e.g. that the amounts involved could be coercive, and might motivate your next of kin to make decisions that were in their best interest rather than yours).  They explicitly don’t require that you be in good enough health for anyone to use your organs to join, so there’s no discrimination in membership.  (Although, as T points out, since they seem to be mostly recruiting through the internet, there’s a procedural bias towards the populations that are more likely to use it.)  And this doesn’t appear to be one of the predictably irrational cases where you make people less altruistic by offering an external reward.

But, in looking at their site, it seems like many of the people who are endorsing it are at least as motivated by a desire to show that incentives and free markets can produce a better outcome than government solutions as they are by they desire to have more organs transplanted.

Because there’s another very simple way to increase the number of organs that are available for transplant, that they don’t mention at all.  Make organ donation opt-out, rather than opt-in.  In other words, rather than having to specify that you want to donate your organs (and then have your next of kin confirm that intention), it would be assumed that you gave consent for donation unless you specified otherwise.  This sounds like a radical concept, but  a bunch of European countries do it, and they have donation consent rates between 85 and 99.9 percent*, compared to less than 30 percent in countries that have opt-in policies.

Fundamentally, these alternative approaches to increasing donation are based on very different hypotheses about why more people don’t donate.  LifeSharers is based on the hypothesis that there’s not enough of an incentive to donate.  Opt-out is based on the hypothesis that thinking about dying freaks people out and so they avoid doing it as much as possible.  I’d put my money on the latter.

The UK is considering moving to a system of presumed consent.  Does anyone think it has a chance in the US?

*Sweden is the outlier here, at 85.9 percent, with no other opt-out country at under 88 percent.  I wonder if there’s some cultural issue here against organ donation, or if they’re more aggressive than the other countries in making sure people know of their right to opt-out.  Either way 85.9 percent is a heck of a lot higher than 30 percent.

29 Responses to “Why not make organ donation opt-out?”

  1. chicagomama Says:

    Quite frankly, I hope this doesn’t have a chance in the US. While I am totally ok with anyone deciding that they want to be a organ donor – I would never want a system that presumes acceptance unless someone opts out. This kind of system seems to rely upon people having no clue that it exists rather than informed consent.
    In many ways, it reminds me (uncomfortably) of paternal right registries that so many states now have which has effectively created a work around for women wanting to place children up for adoption without having to notify or get the agreement of the expectant father. Which seems to benefit potential adoptive parents and adoption agencies rather than the expectant parent(s) and child.
    I am philosophically opposed to organ donation. I will not donate my organs, nor would I accept a donated organ. And I have very little faith in the idea that this kind of program would be well publicized (taking into consideration how the vast majority of opt out systems work – which is to say very poorly for the individual). Since in each state I believe that each person is allowed to choose to become an organ donor when they get their drivers license – it cannot be that more people want to donate and aren’t aware of it. And the DMV (at least in Illinois) pushes donation like you wouldn’t believe. When I renewed my license the last time, the worker asked if I would like to be an organ donor. I said no. She put “yes” on my drivers license (in Illinois, you get a new license immediately). I took it back up to the counter and politely requested to not be listed as an organ donor. She made me a new license, once again having it say “yes” under organ donation. It took the third time to get my license to state that I am emphatically not an organ donor. I can’t even imagine the problems that could occur with a presumed acceptance unless one has joined an opt out program.
    While I wish the best for every person facing health concerns – I don’t think that any one individual’s health needs (especially ones that depend upon the harvesting of someone else’s vital organs) should be something that require the (prospective) donor to opt out. In my mind that removes a troubling amount of choice and agency from the individual and the individual’s family into the hands of government/governing body. I don’t want the government in my uterus, or my doctor’s office, or heck in my home for the most part – so I sure as heck don’t want them harvesting my organs because they can’t find an opt-out contract when I croak. The benefit to individuals needing a organ donation (in my mind) does not outweigh the big brother, probable lack of true informed choice issues that are inevitable in this situation. It squicks me out to even imagine this.

  2. urbanartiste Says:

    I hope this never happens in the U.S. I applaud and have a huge amount of respect for anyone who is a donor or donates a deceased relatives organs. I have a lot of immediate family in medicine and they do not sign their cards and have advised me against mine until I am much older. They seem to have a very different outlook on this issue.

  3. amy Says:

    I think it’d be a tough sell, because it bumps up against the euthanasia debates. Although you can’t sell organs, there’s nonetheless an economic structure around organ donation, which means there’s incentive to harvest. And I have yet to see a hospital administered by angels.
    I recognize the problem, but would prefer to keep it opt-in.
    Incidentally, I ran into a similar opt-out issue here last year. My university was part of a multi-center study of a new temporary-blood-substitute product used in trauma victims, and it was opt-out — basically, if you were in a wreck, knocked out, and hemorrhaging, you were in the study, and might receive the test fluid. As it happened, I was doing some research on the small underlying studies that had given rise to this one, and found something disconcerting. While the new fluid appeared to save lives, your odds of living but being a vegetable or severely brain-damaged appeared to be considerably higher than with the old stuff.
    Now that’s not a burden I want to put on any family member of mine, so I decided to opt out. Much easier said than done, because it presumes that in the midst of saving your life, the EMT is going to rifle through your wallet and look for a card saying you’ve opted out. The alternative was to wear, permanently, a fantastically uncomfortable big plastic opt-out bracelet. I asked the doc who was the PI here whether the EMTs actually look for these things, and he told me they were trained to. Well, trained to and doing are two different things. I imagine there would be similar problems with an opt-out organ donation system.

  4. Dave Undis Says:

    If presumed consent was implemented in the United States, the supply of organs for transplant operations would increase significantly. According to polls, about 90% of Americans support organ donation but only about 50% have bothered to register. If everybody was automatically registered, few people would bother to un-register.
    It’s too bad presumed consent isn’t legal in the United States. Laws will have to be changed to make it legal. LifeSharers offers an already-legal solution to the organ shortage. No legislative action is required.
    LifeSharers helps people donate their organs to other registered organ donors. This creates an incentive for non-donors to become donors.
    Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. Membership is free at http://www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.

  5. bj Says:

    Your commenters are showing you why opt-out isn’t really a plausible option in this country. My suspicion is that opt-out works in some European countries because of fundamentally different ideas about organ donation.
    I’m a huge huge supporter of organ donation. But, it’s a very simple issue for me, because I believe that once my brain is dead, my body has absolutely no value whatever. Others feel differently, and decisions about donation are very personal, and even when I strongly disagree, I can’t see requiring someone who believes differently to have to take action to prevent their body from being used in a way they do not want, even after they are dead.
    I think it takes an awful lot of courage to read Annika’s story (I hope everyone does, even if they choose not to be a donor, though I certainly wouldn’t force them to read it), and then write “I am philosophically opposed to organ donation. I will not donate my organs.” But I respect someone’s choice to follow their own beliefs.
    So, I think this is one of those things where we have to rely on education and publicity, and not rules. We have to be careful how we talk about organ donation, make sure rules about how decisions will be made are carefully stated and then followed. We have to put rules in face that convince people that their end of life decisions will enforced, and then fight the public relations battle. If someone is not choosing to donate because of practical concerns, we can talk about that, and try to allay their concerns. And, we have to respect people who believe that removing organs from their body after they are dead is a violation of their integrity (even when we vehemently disagree with this notion).
    (Not sure what I think about lifeshare — it tries to put the altruism into enforced practice, but I fear, as you do, that methods of trading the information are the flaw. Anyone *can* join, but those less likely to do so are those with less access to information, not necessarily those who know of and choose not to join the agreement. If we give priority based on joining, it seems like we’re essentially giving priority based on socioeconomic status and access).

  6. amy Says:

    Yeah. Dave, I understand your mission. To me, though, the risk of accidentally (or not-so-accidentally) harvesting organs from people who’ve opted out, or who aren’t quite dead yet, is too high. It’s not really the kind of mistake you can undo, either.

  7. carosgram Says:

    I have signed the waivers to be an organ donor and have informed my family that I am willing to do that. I would not be receptive to receiving an organ donation. I have no issues with the fact that people die and that some even welcome death. However, I want to make the decision as to what to do with my body. I want the same right for everyone else. I don’t want the State to presume what I want to do with my body nor do I believe they have any ‘rights’ in respect to my body. “Opt in” is the only option IMHO.

  8. bj Says:

    This unwillingness to receive an organ from a dead person is somewhat novel to me. Does it also apply to living donor donations (i.e. part of a liver or a kidney)? Does it apply to blood?
    The “not quite dead” thing doesn’t bother me at all, because *I* wouldn’t want to wake up from the not-quite-dead state that surgeons do take organs from, but I understand that other people will make a different judgment call.
    I think I’ve toyed with the opt-out provision before and been more sympathetic than I am now. Ultimately, I do think that what happens to one’s own body is a very personal decision, and not one that we can take lightly for the purpose of someone else’s good.

  9. chicagomama Says:

    Unwillingness to receive organ donation (including blood) shouldn’t be all that novel. Christian Scientists refuse (I believe). Organ donation isn’t always what it is cracked up to be – just talk to the families whose loved ones received organs from a patient who was presumed to have died from a cocaine overdose but actually died of rabies (all the recipients died – http://www.medicinenet.com/script/main/art.asp?articlekey=33793). Or those who were infected with HIV or Heptatitis from tainted blood transfusions. Modern science has made great strides – but not painlessly or without injuring innocent people – though to be clear, these issues don’t play a role in my personal objections to organ donation (as either a donor or a recipient).
    As I think almost everyone in this discussion has stated – we each come to our own decisions regarding this matter from intensely personal viewpoints. Just because someone else’s viewpoint does not mesh with one’s own doesn’t mean that it hasn’t been well thought out, nor that the person has some sort of death wish or doesn’t respect life. There do seem to be some quite different ideas of what kind of life each person wants to lead, and what they might define as quality of life.
    As for being willing to be an organ donor, but not wanting to accept an organ donation…I don’t see any contradiction within that. Why would one’s choice to be willing to be a donor necessarily be linked with the personal choices they might make regarding their own medical treatment? That is sort of like saying that a pregnancy surrogate would have to also be willing to undergo personal fertility treatments if they later became infertile. That two don’t necessarily have any interaction with one another.
    Finally, and I hope I am able to say this in a compassionate and kind way – while my heart goes out to Annika and her family and they are in my prayers – no individual person’s story within organ donation either compels or repulses me from my views on organ donation. The recipient plays the smallest part in how my views were formed and why I feel the way I do about this issue. And I do think that trying to attach the choice of being an organ donor to the compelling story of an individual is presents something of a moral hazard. Organ donation can be chosen for the most altruistic of reasons – but that doesn’t mean that anyone’s organs will be transplanted into someone who “deserves” the organ transplant by being particularly sympathetic or personally compelling. For every Annika – there is the corresponding Mickey Mantle who drinks their way through several livers. Ultimately, organ donation has so much less to do with deserving than it does with getting lucky to have a match come up when your number is up. And while I can hope for the best for those who choose to be placed upon the organ transplant list – I don’t feel any moral obligation to put my own body parts up for grabs so that someone else might get a second/third chance.

  10. bj Says:

    Oh, I know that Christian Scientists refuse all medical care. What I didn’t understand was a specific injunction against receiving organs, as opposed to other medical care. What I was asking, specifically, is whether the two people in this thread who have said they’d refuse organs also would refuse blood and living donor organs.
    Something like 30,000 people are saved every year through organ donations. That a few (who might have died anyway) die anyway does nothing to change the math, and would be a very bad reason to avoid organ donation.
    I do not believe that considering that a human life can be saved through organ donation is a moral hazard — that’s the reason to read Annika’s story, not because she’s an adorable, spirited girl the same age as my daughter. Thinking too hard about whether the person “deserves” the organ plays no role in our current donation program.
    Regarding connecting donation & receiving — the connection is being made by Lifeshare, with the assumption that the interest that many would have in their own lives being saved would impel them to sign up by considering their own potential need for an organ, and to reward the community of donors for their willingness to donate.

  11. chicagomama Says:

    Umm, I am not sure this thread is really supposed to be about any individual’s philosophical reasons for not donating or accepting organ transplant. It’s not that I have any problem discussing the issue in depth, rather I don’t want to hijack the thread completely away from the original point.
    If you are truly interested in trying to understand my differing viewpoint on this topic, feel free to email me offline (snarkychicagoladybug@yahoo.com), or, if Elizabeth is ok with it – I would share these views online. Personally, though, I am not sure my philosophical views on this topics should be addressed within the comment section of this particular post.

  12. bj Says:

    I agree that the point isn’t to discuss any individual’s decision making on organs, but to try to give an understanding to those of us (who don’t really understand) of why one would feel vehemently about an opt-out provision rather than an opt-in. I’ve largely moved to the idea that opt-out can’t work, precisely because there are people who feel strongly about it. It seems to me to be one of those decisions where a small minority can have veto power.
    If we organ donation supporters accept that we can’t have an opt-in position, after hearing people like you, we have new tasks in reaching our goals. We can be more aggressive about spreading the factual information about how organs are taken (“harvested” is a politically loaded word), how decisions are made, how people die or suffer waiting for organs, and how people’s lives are altered by getting an organ transplant. We are forced to work hard to convince people who are not philosophically opposed (the majority, we think) to take the steps to donate their organs, and to set up rules to encourage that behavior.

  13. urbanartiste Says:

    I think one of the main problems is that people are willing to keep a person on life support with no hope of recovery for long periods of time. The act of letting go is very emotional, particularly in a hospital. The job of approaching family members in that emotional moment about donating organs is precarious. I thought that some religions forbid any intentional removal of a part of the body.
    I will be blunt, I do not trust the healthcare system, the government or private companies in determining whether or not to keep me alive or pull the plug for my organs. Just recently a funeral service company was convicted for illegal harvesting human bone and tissue. And it bothers me when worth or value starts to get assigned for the living over the sick and dying.

  14. chicagomama Says:

    I will add to urbanartiste’s comment this idea: It is hard for me to understand how it is considered ethical to approach a family who is grieving from the [presumed, but not quite actual at that moment] death of a loved one and ask to harvest the soon-to-be-dead person’s organs. (As an aside, I don’t think you can argue on one hand that personally compelling stories that might mislead donors into thinking their donation will be helping a truly “deserving” recipient doesn’t present moral hazard but that using the word ‘harvest’ is somehow too politically loaded to be appropriately used. It is called organ *transplant*. If we are going to start down the horticultural euphemism road via the medical terms – harvest is perfectly appropriate).
    There seems to be a clear conflict of interest at the medical facility. And as much as I would like to believe that doctors would on one hand do everything in their power to save an individual who comes with traumatic injury to the hospital, or barring any possibility of revivement, letting the person die – it is hard for me to believe that is what is happening when an appropriate candidate for possible organ donation comes to a hospital. From personal knowledge of these types of cases (the hazard of having several doctors in the family), I am aware of medical professionals refusing to call a DOA and keeping a ‘dead’ person alive until the family could be notified because the hospital hoped they could convince the family to agree to organ donation. That is beyond troubling to me. And trying to get family members to agree in a huge moment of stress to do something theoretically “altruistic” for people waiting for a transplant seems particularly coercive.
    So saying, I also believe that if a person’s drivers license (or legal docs) say the person is an organ donor – family members should not need to be consulted for a second round of agreements.
    As for the polls that seem to indicate 90% of Americans support organ donation, but only 50% are actually registered as organ donors…well, that makes me wonder about how the poll was conducted. Because there are lots of things I believe should be available to others to choose from (abortion probably being one of the biggest in terms of controversy) that I personally would never do. So the idea that 90% of people believing that organ donation should occur, and that choosing to be a organ donor is a good thing seems pretty logical to me. It also doesn’t seem at all contradictory that many of those people wouldn’t be personally thinking that they would donate their *own* organs, but others should feel free. Heck, some of them might be flirting with the idea that they would be more than willing to take an organ if they needed it without thinking that they needed to be willing to give their organs up. I think (and some research bears this out) that most people believe most optimistically in their own chances of beating the odds. When asked when they think they will die – most respondents shoot way over the average life expectancy in this country. When asked when they think most other people die – they usually hit the life expectancy number pretty close. That kind of magical thinking in some ways could account for the discrepancy in the polling data. If you don’t think your organs would ever come up for the donation question – why would you choose to donate? And avoiding the idea of death seems to be something of a national pasttime here in the USA.

  15. urbanartiste Says:

    “And avoiding the idea of death seems to be something of a national pasttime here in the USA.”
    I agree wholeheatedly on the that one! I also have doctors and nurses in the family and they have pretty much told me that some wards in the hospital are full of decomposing people on machines, usually over the age of 80. Sorry, if this is grotesque, but it is the truth.

  16. Phantom Scribbler Says:

    BJ, I think Nancy Scheper-Hughes, a medical anthropologist at UC Berkeley, has done some of the most compelling research and theorizing about the troubling ethics of organ transplants, especially regarding the international trade in organs. Reading her stuff has not changed my own opinion of becoming an organ donor *myself*, but it’s important (and very disturbing) reading.
    Chicagomama, I’m very unclear on why the “medical facility” would be likely to have a conflict of interest on organ donation, though. It’s unlikely that the medical team dealing with an accident victim would be the same team that would be performing organ transplant surgery or even treating a gravely ill patient in need of a transplant. Medical facilities are not monolithic institutions with a single goal. If the doctor who has a patient upstairs waiting for a liver is the same doctor who’s vetting trauma victims in the ER, then, yeah, maybe there’s a conflict in the making. But that’s unlikely, isn’t it? If we’re taking “I have several doctors in the family” as our standard of proof, well, so do I, and I’ve never heard of such a thing.

  17. amy Says:

    PS, harvested organs are not, as you know, necessarily transplanted at the same hospital. However, if a hospital is trying — for whatever reason — to meet an organ quota, then staff will be told to push for the organs. Hospitals have variously ethical cultures. Doctors are variously ethical. Employees do come up for review. I don’t want to be half-dead in “judgment call” territory and meeting hospital staff who have some interest in looking good on the organ chart.
    People is people, in other words. I don’t really want anyone to have incentive to take my organs before I’m good and dead.

  18. Phantom Scribbler Says:

    Organ quota? Is there an American hospital with such a thing? Really, I’d like to see a link to a hospital with such a policy on record.

  19. amy Says:

    Oh, come on. You’ve worked for large corporations, haven’t you? It works like this: VP gets letter from counterpart at other large, influential organization saying, among other things, that shorter waiting lists are now a priority. VP disseminates this to other admin, and somewhere in hospital annual planning a line is inserted about doing their bit to shorten waiting lists. The line is repeated, along with many other things, in meetings, and eventually there are departmental and/or staff training meetings in which the need to push and harvest are stressed. Entirely ethically, of course. Entirely ethically. Until you get down to the individual doc, or group of docs, who aren’t the most ethical people you’ve ever met, and who want some brownie points. And who also knows that if necessary you could make a plausible “judgment call” case for harvesting from this or that person.
    Is there a stated quota, no, of course not. (I hope not.) And I doubt you’ll find any of this stuff online; on the whole you don’t see internal hospital memos and planning documents on their websites. But I don’t doubt the pressure is there, along with a sense of how many harvested organs make the hospital look good, and how few make it look bad.

  20. Phantom Scribbler Says:

    I think I’d need some evidence a little firmer than that before I’d make a decision about organ donation based upon that kind of reasoning, amy. You could spin the hypotheticals just as easily in the other direction.
    In any event, as far as I know, waiting lists are managed by the United Network for Organ Sharing. Not by individual hospitals, which would therefore have little or no incentive — certainly not a profit incentive — to make them a priority one way or the other. Hospital administrators have enough to worry about without having to address other organizations’ target goals.

  21. kathy a. Says:

    i’ve been an organ donor since my first driver’s license; that’s 35 years now. while i respect that others make different decisions for their own reasons, i feel really strongly about donation — that once my life has ceased, it would be an honor if any part of the former me could help someone.
    as it happens, my mother died this summer. my sister and i had her medical power of attorney. a couple of hours after mom died, i was contacted [very respectfully] by a tissue bank about donating. my sister and i talked it over, and agreed. i wasn’t sleeping that night anyway, and didn’t mind answering questions about her history; they didn’t mind letting me take breaks. although they decided mom had not been healthy enough to donate tissue, the folks involved were really lovely, and said they consider us a “donor family.” it was a bright spot, having that chance to help.
    i know in my heart that i’d make the same decision for my husband or my children, whom i love with everything i have. i do not see being called upon to make that decision until i am absolutely convinced that there is no hope.
    amy, i don’t share your concerns. i don’t believe that there are quotas or particular pressure about donations on hospitals. and, i think that even when one is listed as a donor, the groups dealing with donations are careful to work with families.

  22. kathy a. Says:

    my story about tissue donation skirts one of the squeemish organ donation problems: there was no question my mom was dead. no need to decide to take her off life support. still, if i had to make the terrible decision to remove life support, it would be comforting [to me] to know something good might come of the horror.

  23. amy Says:

    Hospitals also belong to organizations, PS. Here, have a look from a policymaking standpoint:
    http://74.125.95.104/search?q=cache:AjnGJOstr9kJ:www.academyhealth.org/2006/606/spain.ppt+organ+donation+pressure+-%22blood+pressure%22&hl=en&ct=clnk&cd=5&gl=us&client=firefox-a
    And here’s from the Telegraph on the British proposal last January:
    “While polls show 90 per cent of Britons are in favour of organ donation, 40 per cent of relatives refuse consent for the organs of their relatives to be donated, a figure which rises to 75 per cent among black and ethnic minorities. To solve this, the organ taskforce plans measures to boost donation, including putting pressure on doctors to identify patients as potential donors before they have died.
    The taskforce report – to be released on Tuesday – calls for a senior doctor to be appointed in every hospital as a “champion” of donation, along with a lay person to spread the message about the importance of donation locally.”
    Yes, there’s interest in getting the donor rates up at individual hospitals; yes, there’s interest in figuring out how to make that happen. At some point this means applying pressure to the hospital admin. Including, but not limited to, telling them they must report imminent deaths of potential donors.
    I admire those who choose to donate their organs, and I’m happy to give blood wherever there’s a competent tech. (The last one, not so hot with the needle.) However, I’ve seen enough large bureaucracies at work — including hospital administration — and worked inside enough of them, to keep the Org Donor? label at N on my driver’s license.

  24. Phantom Scribbler Says:

    Amy, if you read that presentation to the end, you’ll see that the study’s authors found that coercion was not an effective way to increase organ donation rates! It showed, in fact, that the legislation had almost no impact on organ donation rates because hospitals couldn’t be bothered to care.
    (Evidence of proposals from Britain make more convincing evidence if (a) the proposal has actually passed? and (b) there’s some reason to believe that the British experience in its centralized national health care system is comparable to the much more diffusely controlled American system.)
    Again, the *potential* for abuse does exist when it comes to organ donation — read Nancy Scheper-Hughes, really. But. One should be careful to distinguish between not-impossible scenarios and things that are actually happening in the United States.
    I’m not asking you to reconsider your position, by the way. I really do respect a reluctance to consider organ donation. I just don’t want other people who stumble across this conversation to assume that what you’re saying reflects currently existing conditions rather than imagined possibilities.

  25. amy Says:

    PS, there is always potential for coercion. What the study says is that they didn’t find the right button, but are looking for it with intent to push. The very fact that someone’s tried coercion means you can bet you’ll see it again, just applied more judiciously.
    As for central control, don’t forget that hospitals — particularly teaching and research hospitals — are not individual entities floating around in splendid isolation. Hospitals form consortia, and funding and policy access flow through consortia. Research hospitals also have a whole capillary system of collaborations with investigators at other hospitals and NIH. From the patient side, yes, it is diffuse. But from the admin side — it’s not quite the same top-down control as NHS, but it’s not that diffuse, either.
    I’ve also seen the inside of a hospital admin at a VP level — a rather nice hospital, one with a good reputation. You’d want to know where your wallet was at all times, if you get my drift. These were not particularly nice people, on the whole, and they sure did want to keep their jobs. At the doctor level, I’ve seldom seen any trouble here. On the contrary, they’ve been unusually willing to go to bat. In other places, though, with lousier healthcare markets, the doctor behavior sometimes put me in mind of East Berlin. Grab what you can, use your elbows, shovel the patients through and prescribe whatever’ll make them happy; rules and ethics are for morons.
    People is people, that’s all.
    When you get a driver’s license, generally it’s the one you’ll keep for several years, and odds are that in that time you won’t give organ donation much thought. However, quite a lot can happen organizationally over the span of several years.
    So what can change that much? Well, here’s a story. In 1990 I went to the bank with my dad; he took out an absolutely enormous wad of cash for walking around with. I thought he was nuts. I asked him why he didn’t use plastic, which was safer. “Not on your life,” he said. Why not? “Because what do you think they do with the information about what you buy and where?” Dunno, Dad. “They keep it. And they make databases.” Well, then I thought he was nuts and paranoid, too. 11 years later, he didn’t look so nuts and paranoid, because 11 years later, people working for our charming government had career interests in having a good snuffle around in these databases and many others like them, to see who they could fish up to drop at their bosses’ feet. One more attack and it would’ve been much worse, as people dropped their undies and their civil liberties and ran.
    There is a big difference between not-impossible scenarios and ones that are likely, given human nature and the right organizational and technological setups. So I think it is well to have a sense of human nature and history informing such decisions, particularly when it comes to something as important as your eyes, your heart, your liver, your hands.

  26. Phantom Scribbler Says:

    That story about your dad is very nice, but it doesn’t begin to convince me that your scenarios should be classified as “likely,” rather than “not impossible.” Nor does your personal experience with some hospital somewhere (the plural of anecdote not being data and all that). People is people, yes, and some people tend to be a little paranoid and nuts, but that is certainly not the same as accurately recognizing and predicting trends!
    I think we will have to agree to disagree on this one, noting, as we must, that we have very different senses of human nature and history, not to mention very different senses of how much risk is acceptable in pursuit of a possible good.
    I wonder, Elizabeth, whether the vehement anti-organ donation arguments on this thread have changed your opinion about opt-out structures at all?

  27. amy Says:

    PS, I didn’t say I’m anti-organ-donation. I said I’m anti- giving hospital staff the right to decide you’re ripe for harvest. If you want to make a gift of your organs, hooray for you.
    How do you bypass the hospital staff and the hospital incentive to harvest? The only way I can think of off the top of my head is rather expensive — you make it so the hospital gets absolutely no credit for the donation. Your body’s quickly transferred to something like an exit moyl — someone private, someone paid and insulated well enough that there’s no incentive to respond to outside pressure — who removes the organs and off they go.

  28. urbanartiste Says:

    I would like to know how far people would go on the donation. I watched the Today show the other morning and they had this wonderful segment on a woman who was to have two arm transplants and a hand transplant. My first question was ‘where are they getting the limbs from?’ It is one thing to donate a kidney, liver, etc., but how far would you donate? We had a family member donate her body to medical science in the hopes that after her death her disease could be cured someday and that is noble. Are all those cadavers for medical schools donated or some undentified deceased? My fear is that if donation is government/corporate run we will be one huge collective and there will be less individual rights. What is stopping us from just deciding that the deceased should be used for the living? Some films have touched upon this such as The Island.
    Another story freaked me out the other day. A hospital removed a man’s brain during autopsy and it was sent to a medical facility for tests and now it is missing. The widow never gave consent for it to be donated and now the family is suing since they are upset that the man has been buried with no brain. That one freaked me out because the brain is the mind of the individual.

  29. bj Says:

    ” That one freaked me out because the brain is the mind of the individual.”
    Not after they’re dead. After they’re dead, it’s tissue. Mind you, I’m not advocating losing people’s body parts, just pointing out how I feel about dead bodies. To me, they do not contain the person at all. Clearly some of the opt-in/opt-out debate centers on what degree of attachment one feels to a dead body.
    I think people should be able to specify what kind of donation they are comfortable with — I would certainly have no problem with someone getting my arms after I’m dead, but think someone else’s squeamishness should be respected.
    Cadavers are donated, but agreeing to organ donation does not mean that your body can be donated as a cadaver for either research purposes or for medical school classes. Cadaver donation is something you opt-in to, specifically. Tissue banks also solicit donations (say, for example, of brain tissue) for Alzheimer’s research. But, neither of these follow from organ donation.

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