First Things asked me to opine on the recently introduced New York legislation (A-9865) to enact a presumed consent law for organ donation. Glad to oblige. I open by identifying the problem. From “Presumptuous Consent:”
Many more sick people need kidneys, hearts, and livers than there are kidneys, hearts, and livers to go around. This shortage is the result of both decreased supply and increased demand. For example, public safety laws requiring that motorists wear seat belts and motorcyclists helmets have reduced the kind of catastrophic head injuries that often lead to organ donation. At the same time, the capacities of transplant medicine have advanced exponentially, allowing more people to benefit from a transplant than ever before. The toll taken by the resulting shortage is measured in the number of patients who die while waiting in line for an organ to become available.
People are wary of transplant medicine. In order to gain trust, the transplant medical sector made two solemn promises to society:
Broadly stated, these rules prevent patients—no matter how sick or catastrophically disabled—from ever being treated as a mere organ system rather than an equal member of the moral community. This is accomplished through adherence to two legally enforceable principles:
Donors of vital organs must be clinically dead before procurement, a requirement known as the “dead donor rule;” and Organs will be taken only if consent is freely given—either by the patient via signed organ donor cards or by family members. Indeed, informed and freely given consent is currently recognized as being so symbiotically bound with the public’s trust in the transplant system that organs are almost never procured without obtaining explicit familial consent even when a donor card is on file.
Both are now in danger of being broken. I warn against the many proposals to eliminate the dead donor rule, oft discussed here at SHS. I then pivot to presumed consent. I describe the legislation and explain that while it seems to have increased the organ supply in Spain and France, it has had mixed results elsewhere. Besides, the USA is not Europe:
We value individualism over collectivism, autonomous decision making over the imposed “greater good.” Indeed, presumed consent laws could unleash a boomerang effect: Many would resent the new approach as government coercion over one of the most intimate decisions anyone can make and protest by taking the opt out option.
And then there is the current troubling medical context in which presumed consent would be implemented:
The Obamacare debate, with its specter of “death panel” rationing boards and waiting lines, significantly undermined the people’s faith in our medical system. Now, factor in presumed consent to the popular fears that expensively ill and injured patients will soon be discarded as so much medical waste. Finally, mix in already existing medical futility policies—such as in Texas—which permit hospital ethics committees meeting behind closed doors to refuse wanted life-sustaining treatment based “quality of life” or the cost of their care—and you have a perfect prescription for distrust in all things medical. In such a milieu, the temptation to believe that your catastrophically head-injured son could have been saved, but died because his organs were deemed more valuable than his life, would be, for some, hard to resist.
Last but not least, there is the issue of public policy integrity, a commodity I worry is in increasingly short supply in our world driven by emotional narratives:
We have become a public policy promise breaking nation. Think of the many times solemn assurances have been given that reasonable restrictions will be maintained in order to gain popular acceptance of controversial policies—and how casually they were cast aside once the deal was sealed. Remember when IVF was going to be limited to infertile married couples? Now “Octomom”—a fertile, single woman—has fourteen children conceived by IVF and has become a cover model for celebrity magazines.
We can’t permit a similar pattern to swamp the ethics of organ transplant medicine. A bad idea—even when envisioned for altruistic reasons—is still a bad idea. Presumed consent has no place in American medicine or public health policy.
Good motives do not necessarily make good policy–in fact, as with presumed consent, too often, just the opposite.
May 18th, 2010 | 11:47 am
Wesley, how does this proposed presumed consent law in New York apply to people who don’t have driver’s licenses? Children, the elderly who have given up their licenses, people who choose not to drive, etc.? Are they presumed to have consented or not?
Wesley J. Smith Reply:
May 18th, 2010 at 11:56 am
The law is silent on that, except most people have ID cards, and so I presume the same option would apply. But as I read the legislation, if one is not on a list of opt outs, one is opted in. Here is the proposal link: http://open.nysenate.gov/legislation/bill/A9865
May 18th, 2010 | 11:54 am
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May 18th, 2010 | 1:30 pm
Wesley,
As the son of someone who received an organ transplant, I agree with your objections to presumed consent. I well understand the temptation to enact such a policy, but it would be wrong. I would go even further and say that the combination of presumed consent with the ethos of quality of life/futile care for end of life decisions would not only erode trust, it would create enormous pressure to expand the range of situations in which organ “harvesting” would be acceptable as the “value” of one life is weighed against another.
Having said that, I want to push you again on your earlier statements regarding vaccination. Setting aside the question of whether the purported vaccine/autism link has any validity, can you not at least understand the argument that many of the same philosophical issues and issues of public trust are at play when it comes to mandatory vaccinations? I am not arguing against mandatory childhood vaccination. I think the individual and public health benefits weigh overwhelmingly in its favor. But, can you not at least concede that our policies of vaccination are guided by a cost/benefit analysis and consideration of a greater good over individual autonomy? I think in the case of vaccines you are so concerned about the possible loss of public consent or trust that your response to those who worry about giving them to their children is scornful and dismissive. You engage in your own form of saying science has settled it, so shut up and get with the program. In my opinion, that attitude on your part only serves to exacerbate the tensions around this issue.
Even without the autism question, there are always statistical risks with vaccines, so the question remains fundamentally the same.
What about the concerns over possible use of fetal tissue in vaccines? Does the greater good/individual benefit argument win out there as well? In either case, is there a possible solution to that conundrum?
I raise these questions seriously, and I think you are being intellectually dishonest and inconsistent if you do not respond to them in a more considerate and thoughtful fashion than you have so far.
I normally try to stay very much on topic, but since I consider there to be an overlap in the questions and concerns raised by the issues of organ donation and vaccination, I feel justified in inserting the latter issue into this discussion.
Wesley J. Smith Reply:
May 18th, 2010 at 2:16 pm
Yes, there is a statistical risk with any medical procedure. But when it comes to communicable diseases, I think it is right and proper to require children to be vaccinated. It has done so much to prevent so much harm. Fetal tissue requires much thought. If the tissue comes from a fetus that miscarried, I see no problem whatsoever. If it came from an abortion, as I wrote in Consumer’s Guide, it would depend on whether the abortion was procured for that purpose, or was undertaken with research as a motive. I think the question is whether the procedure treated a human being as an object. Hope that helps.
May 18th, 2010 | 2:33 pm
Wesley, I appreciate your response, but I still think you are ducking the fundamental issue. Can’t you see that the same kind of cost/benefit analysis made for childhood vaccination could be made by proponents of the “opt out” law for organ donation, and that it raises similar issues of private autonomy vs. public good. In part my concern is intellectual. But, as someone who spent years observing state legislators, I know that this type of comparison is exactly the kind that proponents might make. The gentleman senator from Yahoo County would rise and babble forth about all of the other such tradeoffs we make – vaccines, seatbelts . . .and then issue comforting reassurances about the opt out provision and of course that this would apply to those who are already brain dead, strict regulations, etc., etc. Sigh, gotta run.
May 18th, 2010 | 7:37 pm
Presumed consent would degenerate into no consent, because, let’s face it, many people are too niave to think they really have a choice.
Moreover, who wants to put themselves in the embarrassing position of “not wanting to help others”. They would seem to imply that they’re “selfish”, by not consenting to it.
Being able to consent, as free persons, is one of our greatest gifts. We simply cannot afford to sacrafice it on the utilitarian altar.
May 19th, 2010 | 11:42 am
With regard to the first post, New York’s legislation only applies to persons holding a driver’s license, as the legislation specifically and only amends the Vehicle and Traffic Law. The bill is poorly drafted, but it appers that only drivers (who have not “opted out”) will be automatically enrolled in the tissue/organ registry. Which could raise a big equal protection question…
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