Yesterday, I argued for more aggressive efforts to boost the supply of cadaveric organs available for transplant: If an out-of-control trolley were heading toward a living person strapped to the tracks, we surely ought to divert it to another track, even if doing so will crush a corpse along the alternate path. If we are permitted to crush a corpse when it’s the only way to save a life, even if the family of the deceased doesn’t want us to, then we can recover organs from the deceased when the invasion is fairly minimal (it won’t interfere with burial) and the gains are not one life but several. I emphasized an important qualification, however: we are not permitted to just take organs when we can obtain consent with less invasive approaches, like offering financial or priority incentives.
Commenter SG raised questions about whether trolley problems do a good job of testing our intuitions. There is certainly a lively debate about the reliability of trolley problem intuitions and the reliability of moral intuitions more generally. Despite pitfalls, I believe trolley problems can help us abstract away morally irrelevant considerations. A family considering donation, for example, doesn’t know whose lives are in the balance. But we know that as a matter of policy, many lives end prematurely because lifesaving organs are wasted. Therefore, the trolley problem I posed helps us removes distractions and confront the loss of life more directly.
Commenter Mitch proposed a variation: Suppose the deceased on the alternate track is your recently-deceased loved one. I have two replies: First, we need not frame the problem that way in order to draw conclusions about organ donation policy. The destruction of the corpse will be very upsetting to the family, but when we decide public policy, we typically abstract away from who our particular loved ones are. It would bias my hypothetical to stipulate that the living person is your relative, and it would bias the opposite way to assume the deceased was.
Second, even if the trolley problem were posed in this fashion, you should still flip the switch if it’s the only way to save a living human. (Perhaps families should be excused from blame given that they must decide under pressure while grieving, but that’s another matter). Interestingly, medical examiners frequently conduct autopsies in which consent is irrelevant. Some of these investigations may save lives by preventing murders. But organ donation is plausibly much more lifesaving than medical investigation.
One last point: It’s easy to think that our choices are to give up our organs or have them stay intact forever. Perhaps mandatory autopsies are viewed as different than conscripted donation because autopsies do not involve a prolonged “using” of someone’s organs. But the “using” happens either way. Your organs can be taken over by bacteria and insects or they can go to save living people. If we were better able to come to terms with such unpleasant facts, we’d more effectively save and heal the living.
Yesterday, Glenn discussed paying people to donate nonessential organs while they are alive. I will argue that we ought to more aggressively incentivize organ donations from the recently deceased.
Imagine that an out-of-control trolley is heading toward an innocent person who is for some reason strapped to the trolley tracks. You happen to be standing near a switch that can divert the trolley to a different track and represents the only available means of saving the person. Here’s where this trolley problem gets much easier than others you’ve seen: If you divert the trolley, it will unavoidably crush the body of an already-deceased person who is strapped for some reason to the diversion track. Are you morally permitted to flip the switch to save a life when doing so will crush a deceased person? Clearly you are. Indeed, you are morally obligated to do so.
What if the family of the deceased is standing nearby and urges you not to, pleading that if their loved one’s remains are crushed, it will interfere with his religious preferences about burial? No matter how much it upsets the family and would have upset the deceased, you are permitted to divert. Now what if diverting would save not one life but six or seven? And what if the trolley wouldn’t crush the deceased beyond recognition but would merely cause some internal change that would be invisible at burial? Surely the answers only become easier.
If you’ve answered as I have, we should be permitted to take the organs from the recently deceased when doing so represents the only way of saving the six or more people who need those organs to survive. Does this mean we should implement a routine salvage program where people must donate if they die with organs available for transplantation? Not necessarily. There may be financial or priority incentives that will induce sufficent donation such that we don’t have to go so far as to conscript lifesaving organs. But our current practices cause far to much unnecessary death and misery. See here and here for more. [Originally posted at Prawfs]
The Journal of Law, Medicine, and Ethics has just published an article by me on transplant tourism, that discusses the burgeoning international market for buying and selling kidneys. I review the existing data from Pakistan, Bangladesh, and India, which is pretty deplorable. As I show the vast majority of these sellers are poor and using the money (which is a significnat sum in terms of what they earn, even though in the end only 2/3 is paid) to try to buy themselves out of bonded labor, pay off familial debts, or try to mount a dowry. Many are misinformed or decieved about the health consequences for them and the needs of the person who will receive their kidney. Once they have agreed to sell they are often pressured not to renege. They are often released too soon post-transplant compared to what is optimal for a transplant, and their self-reported health post-transplant is worse. Many experience significant social stigma as a “kidney man” (or woman)and the 20-inch scar (the more expensive way of doing the procedure would reduce the scar size) marks them for life and makes it difficult for them to marry. Most express significant regret and would advise others not to undertake the operation.
Despite these grave facts, as I argue in the paper (and in greater depth for many of these arguments in the chapter on transplant tourism in my new book on medical tourism under contract at Oxford University Press), many of the traditional justifications from the anti-commodification literature — arguments relating to corruption, crowding out, coercion, and exploitation — do not make a convincing case in favor of criminalization. If a ban is justified, I argue the strongest arguments are actually about defects in consent and justified paternalism, on the assumption that criminal prohibition is a second best regulation in the face of the impossibility of a more thoroughly regulated market.
I then examine what means might be used to try to crack down on the market if we concluded we should. I evaluate possibilities including extraterritorial criminalization, professional self-regulation, home country insurance reimbursement reform, international criminal law, and of course better organ retrieval in the patient’s home country.
I will keep writing on this topic, including for my new book, so even though this paper is done feel free to email me your thoughts.
ELPAT (Ethical, Legal and Psycho-social aspects of Transplantation) is a division of the European Society of Organ Transplantation (ESOT). During the last weekend, the third ELPAT Conference has been held in Rotterdam. It has been a fascinating meeting that has gathered a group of prestigious scholars from many countries around the world to debate several ethical and legal topics involved in transplantation. Glenn Cohen has been one of the key speakers, along with Robert Truog, Alex Capron, Jennifer Radcliffe Richards and many others.
One of the issues which has been hotly debated is “organ donation euthanasia”, a practice that is currently being developed, albeit still marginally, in Belgium, where, as you know, euthanasia is legal since 2002. The issue which intrigued me more is the possibility of adding those organs to the common European pool for their eventual transplantation in a patient from a country in which euthanasia is still forbidden. In a way, our reluctance to such scenario seems to be analogous to the use of organs from executed prisoners. There are even more perplexing alternatives. As is well known, many British citizens travel abroad in order to get euthanasia (Switzerland is the main destination but also The Netherlands and Belgium). Should they also become eligible donors, would it be possible for British citizens to receive the organs? How can we handle that with the allegedly criminal behavior of the travel companions of the “suicide tourist”?
Euthanasia is not permitted in the US, although some States have enacted “aid in dying” statutes. I was wondering, first, if it might be possible in those States to be an “aided in dying organ donor”. What happens if the person who is prescribed the lethal dose requests it? Is it possible to arrange things in such a way that that request is feasible and honored (maybe the individual ingests the pills in an ICU)? Secondly, what about the organs? Should they remain in the State in which aid in dying has been legalized? What do you think?
If you live long enough you really do see it all. News.Com.Au reports that an Australian judge has permitted a widow to extract sperm from the body of her husband who recently committed suicide to be used for In Vitro Fertilization (IVF) of the woman. According to the report “The woman, whose name has been suppressed, had spent the past two years trying to conceive and recently began in vitro fertilisation (IVF) treatment when her husband, who suffered from severe bouts of depression, committed suicide.” From the article there is a report on some of the reasoning of the court
Under the Human Tissue and Transplant Act, a designated officer at a hospital (usually a senior doctor) may authorise a request from a next of kin for the removal of human tissue from a deceased person for medical procedures. Judge Edelman said sperm fell under that scope. The only restriction is when a person dies in sudden or suspicious circumstances. In those cases permission needs to be given by the State Coroner who did not object to the sperm being removed and stored. Because of the short turnaround time for the hearing, Judge Edelman said the Health Minister did not have an opportunity to appear at the proceeding. He said the Minister would have an opportunity to be represented at any future hearing concerning the use of the sperm for IVF.
This case raises a number of very interesting questions.
First, I think the court’s reasoning distinguishing the extraction of sperm (permitted) versus its eventual use through IVF (which seems may be subject to prohibition later) interestingly implicitly makes a distinction I have drawn in my own work between a bodily integrity right related to one’s reproductive material and a non-use right I have called “The Right Not to Be a Genetic Parent?” The Court seems to suggest a default rule where extraction is permitted as a matter of course (no posthumous bodily integrity) but perhaps a different rule as to the Right Not to Be a Genetic Parent. Second, the case raises the more general question of the nature of the interests of the would-be genetic parent in posthumous reproduction. In The Right Not to Be a Genetic Parent I argued that the strongest argument for such a right is connected to what I call “attributional parenthood,” the attribution by the genetic parent, the child, and third-parties of parenthood to him/her on the basis of the genetic tie. Posthumous parentage, though creates some special problems with this argument. As I suggest in a rather lengthy footnote (n. 64) in that article:
Boston recently followed many other world cities in implementing a bike share program. As the New York Times recently reported, North American cities face a dilemma: if the European experience is any guide, for bike shares to take off the city must do away with the helmet requirement. That turns out to be not a health versus leisure trade-off, but a complex health vs. health trade-off. As the New York Times puts it:
In the United States the notion that bike helmets promote health and safety by preventing head injuries is taken as pretty near God’s truth. Un-helmeted cyclists are regarded as irresponsible, like people who smoke. Cities are aggressive in helmet promotion. But many European health experts have taken a very different view: Yes, there are studies that show that if you fall off a bicycle at a certain speed and hit your head, a helmet can reduce your risk of serious head injury. But such falls off bikes are rare — exceedingly so in mature urban cycling systems. On the other hand, many researchers say, if you force or pressure people to wear helmets, you discourage them from riding bicycles. That means more obesity, heart disease and diabetes. And — Catch-22 — a result is fewer ordinary cyclists on the road, which makes it harder to develop a safe bicycling network.
Suppose hypothetically we came to the conclusion that more life years would be lost to obesity/heart disease related injuries from forbidding helmet laws than would be saved from putting helmets in place, would that justify doing away with our helmet laws? Does it matter that the injuries cause immediate death/injury in the un-helmeted case but are gradual to accumulate as to obesity and heart disease in the helmet case? That might in turn depend on whether we believe in the “rule of rescue” and whether we think of it as merely a rule about allocating aid versus preventing harm in the first place. If most bicyclists who are injured are younger, given the typical profile of the city biker, is there a dimension of age-weighting that might be relevant. Or, in fact, given that those who do not use bikes now due to the helmet laws will be older when they suffer from obesity/heart disease give us a reason to think age-weighting is inappropriate in this domain. This is somewhat similar to the arguments offered in the Age Discrimination in Employment Act (ADEA) context, that unlike Title VII or the ADA we will ALL (if things go well) eventually be old, so protection for the old benefits everyone. However, those who get hit by cars without helmets will likely die young. Finally, what role for choice, responsibility, resistance to the nanny state, etc?
Don’t just read the summaries – check out the tweets themselves! From now on, links to the original tweets will be included in our round-up. Additionally, as a reminder from the last post, retweeting should not be read as an endorsement of or agreement with the content of the original tweet. With that, read on for this week’s round-up…
Arthur Caplan (@ArthurCaplan) posted an article about the growing trend of paying for convenience in healthcare with privacy, sometimes without formal consent. The latest example (and the subject of this article) is palm-scanning at New York University Langone Medical Center. (11/11) [Note: Dan Vorhaus also tweeted this the next day.]
Frank Pasquale (@FrankPasquale) linked to a post on the potential valuables (medicines, solvents, chemical treatments) hidden amongst newly-discovered marine micro-organisms. With regulations hefty on land but largely non-existent for water, there are concerns that damage from harvesting could result in ecosystem damage or exploitation of water resource-rich developing nations. (11/11)
Dan Vorhaus(@genomics lawyer) brought up a link describing the “particularized consent approach” of the website my46, meant to facilitate the process of helping people decide what results of genetic testing to see and when to see such results. Combining this with his post about the direct-to-consumer genomics of 23andMe, it is clear that this is an area to watch. (11/12)
Daniel Goldberg(@prof_goldberg) exclaims his love for the term “empathotoxin” in conjunction with the link for this blog post. The post talks about the declining sense of empathy correlated with medical training as according to a research review by American Medicine, with results based on self-reporting. (11/12)
Kevin Outterson(@koutterson) tweeted an article about the oncoming scrutiny likely to hit Congress in the throngs of the current meningitis outbreak. While state boards and the F.D.A. are receiving much of the onslaught as a result of their lax oversight, Congress has hindered stronger regulation for drug compounders particularly in regards to defining the F.D.A.’s policing authority – and thus, say some, is partly deserving of blame. (11/14)
Daniel Goldberg(@prof_goldberg) also linked to an article that talked of lessening the gaps between the mainstream views concerning disability (the “outside” view) and those within the disability community (the “inside” view) when considering law. By proposing a certain set of “framing rules” facilitated by input from the inside view, nondisabled people can make more informed decisions regarding the relationship to disability. (11/14)
Dan Vorhaus(@genomicslawyer) posted an article that followed up on an earlier tweet from our weekly round-ups detailing China’s new draft regulation for human genetic materials, including but not limited to organs. (11/15)
Frank Pasquale (@FrankPasquale) included a link to the The New York Times piece on the massive drug shortages plaguing the nation’s healthcare system. Pasquale noted in his tweet that organizations which purchase on behalf of groups, often for hospitals, may be contributing to this shortage. (11/17)
[Ed. Note. 11/12/12: Just to be clear, retweeting should not be read as an endorsement of or agreement with the content of the original tweet.]
With Election Day now come and gone, our bloggers were tweeting this week about the results, in addition to the greater happenings in health law and ethics. Read below for this week’s round-up:
Arthur Caplan (@ArthurCaplan) retweeted a post about the recent clinical trial done on chelation, a “fringe” heart disease treatment whose popularity often hinges on a patient’s distrust of conventional medicine. Evidence of the treatment’s effectiveness looks to be marginal, at best. (11/4)
Michelle Meyer (@MichelleNMeyer) retweeted an article that explained the problems in the intersection between neuroscience and law, namely how emerging technologies in neuroscience are not being used appropriately to understand criminal behavior. The author advocates for a renewed look at how neuroscience and law can work together, not only to evaluate defendants effectively, but also to customize plans that can serve the interests of both the defendant and the public. (11/5)
Dan Vorhaus (@genomicslawyer) linked to a new piece he co-authored on clinical data and genetics, entitled “The Next Controversy in Genetic Testing: Clinical Data as Trade Secrets?” (11/6)
Michelle Meyer (@MichelleNMeyer) aptly summarized the results of Massachusetts’ ballot questions with her tweet: “Sick folk in MA can now smoke pot but, it seems likely, not have the aid of their doc in controlling the timing & nature of their death.” (11/6)
Daniel Goldberg (@prof_goldberg) linked to a study done on children with epilepsy and their families. Goldberg noted that the study’s results indicate a serious “ethically pernicious” problem that in fact worsens the condition of those afflicted with epilepsy more so than may be originally perceived: stigmatization. (11/7)
Frank Pasquale (@FrankPasquale) tweeted a blog post that talked of the need to increase the FDA’s power in order to curb the fungal meningitis outbreak now affecting individuals nationwide. Lamentations of the state-based system’s inability to handle the problem had undertones of concern for future situations similar to this one sprouting up again. (11/8)
Frank Pasquale (@FrankPasquale) also published a news update from Georgia, where legislators are ending the discount on license renewal prices that had previously been given to motorists who signed up to be organ donors. While many expressed fear that the policy would decrease the number of donors, others in the medical community admitted that there had been no demonstrated link between the policy and increases in donor sign-ups. (11/10)
Picture the scene (I). Its 4 am, November 1st. 4 young girls in their Halloween costumes are being rushed to the hospital after the tragic stampede that took place minutes ago at the “Madrid Arena”, a huge disco in which more than 10,000 people gathered to listen to a super DJ which goes by the name of “Aoki”. You can read here the whole story. Three of the girls were pronounced dead on arrival, and the fourth, although not dead yet, suffers from devastating brain injury due to the anoxia. She is placed on a ventilator and the subsequent tests confirm the horrible prognosis. Her family, members of the ultraorthodox catholic sect known as “Opus Dei” (remember “The Da Vinci Code”?), agrees to the withdrawal of Belen’s life sustaining treatment and to donate her organs. Pedro Almodovar would not have written the script in a better fashion. But wait… Continue reading →
Last month, John Gurdon and Shinya Yamanaka were jointly awarded the 2012 Nobel Prize for Medicine for their research on induced pluripotent stem cells (iPSCs). iPSCs are capturing the public imagination as embryonic stem cells did fifteen years ago, but without the controversy surrounding the destruction of embryos: iPSCs can be garnered instead from living somatic tissue of an organism at any point in its lifespan–even late adulthood. Yamanaka’s research has shown that somatic cells can be “reprogrammed” to develop into any kind of cell–including an embryo–speaking to the vast research potential of iPSCs.
In light of the research potential of iPSCs, I wanted to highlight the results of a remarkable study (published last month) where scientists induced iPSCs from mice into primordial germ cell-like cells, and aggregated them with female somatic cells to create mature, germinal oocytes. The team was then able to show that these oocytes, after in vitro fertilization, yield fertile offspring. Essentially, the research team created viable mouse embryos from skin cells, and fertilized them using IVF to produce healthy mice, some of which have already produced offspring of their own.
[Ed. Note: Several of our bloggers are active on Twitter. In a new feature, we'll be posting some highlights of their tweets each week so you can stay in the know - or think about following them directly!]
Dan Vorhaus (@genomicslawyer) linked to Bloomberg’s article on the current underutilization of genetic tests for Lynch Syndrome, responsible for potentially 3% of all cases of colon cancer. Authors Langreth and Lauerman note that the lack of testing is but one example of the tendency to avoid such tests due to “doctors’ ignorance and financial disincentives.” (10/29)
Daniel Goldberg (@prof_goldberg) shared Iona Heath’s article on the problematic nature of current breast cancer screening awareness programs, discussing how women are not given enough information to decide if the potential treatments that follow are indeed worth the psychological devastation often invoked. (10/30)
Michelle Meyer (@MichelleNMeyer) retweeted an editorial on medical genetic paternalism. The post by Razib Khan discussed how physicians deciding whether to tell parents about unforeseen genetic test results of their children can be considered not only an act of malpractice, but also morally wrong. (10/30)
Einer Elhauge (@elhauge) linked to a new review of his acclaimed book, Obamacare On Trial by the National Law Review. (10/31)
Daniel Goldberg also tweeted a review by Boddice of Javier Moscoso’s new book, Pain: A Cultural History. (10/31)
Arthur Caplan (@ArthurCaplan) linked to news about China’s promised initiative to reduce the dependence on death row inmates for organs. A new national organ donation system, based on a system previously piloted by the Red Cross Society of China, could take effect as soon as early 2013. (11/2)
Arthur Caplan also posted on the Vatican’s announcement to hold its second “International Adult Stem Cell Conference,” revisiting this complicated issue. (11/2)
Arthur Caplan additionally linked to a report on the debate and complications regarding feeding tube use, as published by Krieger of Mercury News. (11/2)
Congrats to our blogger, Al Roth, for his Nobel Prize in economics (alongside Lloyd S. Shapley of UCLA)! Al built on Shapley’s theories about the best ways to match “agents” in markets — for example, students matched with schools or organ donors with patients needing organs — and conducted experiments to further illuminate Shapley’s work. Al presented a really fascinating paper (with his colleague Judd Kessler) at one of last year’s Harvard Health Law Policy workshops on organ allocation policy and the decision to donate, and you can find lots more about his interesting work over at his Market Design blog.
Al Roth has an interesting post up today at his Market Design blog referencing some data on the crowding out effect, i.e., the idea that if you pay people for something that they are currently donating, altruists will be “crowded out” and you’ll end up with less of the thing that you need. It turns out that the data just don’t support that theory. Check it out.
“The current proposal for kidney allocation from the UNOS kidney committee is what it is not because it was the first thing we thought of, and “wow, it’s perfect” but rather it is the product of 8 years of trial and error, consensus building, and compromise. To state that EOFI takes into account both equity and efficiency would seem to suggest that the current UNOS proposal does not. How could this be? We have tried over 50 different methods of allocation and simulated them (which has not happened yet with EOFI). And with each simulation, we view the results and how the system affects all sorts of different groups (NOT just age, but blood type, ethnic groups, sensitized patients, the effects on organ shipping, the effects on real efficiency in the system (the actual logistics). And we have seen that some methods of allocation can generate massive utility (or efficiency in your terminology). We can get thousands of extra life years out of the current supply of organs. But in each instance, we have made concessions in the name of equity. The current proposal does not increase or decrease organs to any age group by more than 5% (compared to current). This has been our compromise on equity. What we see in utility/efficiency is an extra 8000+ years lived each year with the current supply of organs. So the current policy has done a tremendous amount to balance equity and utility. And we have left thousands of life years lived on the table in the name of equity. Now you may argue that we have not done enough in that regard, but rest assured, we have given equity hundreds of hours of consideration.
The Kidney Transplantation Committee of the Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) has put forward a proposal that would substantially revise the existing national allocation system for kidneys from deceased donors. It would also dissolve alternate local kidney allocation systems, which were put in place to study various allocation methods, some of which have been incorporated into the new proposal.
The proposal contains a number of provisions. Whereas the current allocation system is focused on the time a patient has been on the waiting list for a kidney, the new proposal suggests a tiered system: The 20% of kidneys that are ranked highest with regard to the likely duration of functioning once transplanted will be matched with the 20% of candidate recipients who are expected to have the longest time to benefit from a transplant. The logic behind this suggestion – like many others driving health policy considerations these days – is an attempt to maximize utility. Although the attempt to extract the most benefit out of a precious, scarce resource is certainly in keeping with good stewardship, the proposal raises concerns about fairness: What about patients who have a lower life expectancy due to age, disability, coexisting conditions, or socioeconomic status? Will they be deprioritized, with an increased risk of either dying before they get a transplant or of receiving a transplant that may not last for long? This would mean a departure from current policy, which focuses on waiting time, and it would also diverge from policies for other organs, such as livers, in which urgency is of primary concern and very sick patients are prioritized. On the other hand, stratifying organs for transplantation is not entirely new: in an attempt to reduce the number of discarded organs, several European countries have established so-called ‘old-to-old’ programs, which match the kidneys of donors 65 years of age or older with recipients of a similar age.
At the same time, the OPTN/UNOS proposal aims to promote equality of opportunity for the remaining 80% of potential recipients, by calculating their waiting time from the onset of end-stage kidney failure rather than from the date when they were added to the waiting list and by correcting for biological factors such as uncommon blood type or high immune-system sensitivity.
The proposal can be expected to undergo careful scrutiny by the different stakeholders. There is a period for public comment running through December 14, 2012. Have a look at http://optn.transplant.hrsa.gov/news/new… and contribute to the debate.
A few different things are intertwined here: the long waiting lists, the congested process of offering kidneys and having them accepted or rejected and offered to the next person on the list, and the ordering of the list, which in turn might influence how often people need a second transplant, which comes back to how long the waiting lists are…There are lots of interesting and important questions about how to most efficiently allocate the scarce supply (see e.g. Zenios et al.)But organ allocation has an unusual aspect: how organs are allocated may also influence the supply, by changing donation behavior. [And this is the topic of Al's talk today.]
Older Kidneys Work Fine for Transplants“Using data from more than 50,000 living donor transplants from 1998 through 2003, researchers at the University of British Columbia concluded that the age of the donor made no difference to the eventual success of the transplant — except for recipients ages 18 to 39, who were more likely to succeed with a donor their own age. Patients in this group accounted for about a quarter of all the patients studied. The scientists also analyzed lists of people waiting for a kidney from a deceased donor and found that the probability of becoming ineligible for donation within three years was high, varying from 21 percent to 66 percent, depending on age, blood group and severity of disease. Waiting can be fatal, the authors contend, and an offer of a kidney should not be rejected simply because of the donor’s age.”