Reproducing After One’s Suicide

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:

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The Ethics of Bike Shares: Some Tough Distributive Justice Questions about Helmets, Fatalities, and Obesity/Heart Disease

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?

Twitter Round-Up (11/11-11/17)

By Casey Thomson

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)

Twitter Round-Up (11/4-11/10)

By Casey Thomson

[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)

Should autopsies prevail over organ donation? A drama in three acts

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… Read More

Using Tissue Samples to Make Genetic Offspring after Death

By Yu-Chi Lyra Kuo

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.

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Twitter Round-Up: What Our Bloggers Are Tweeting About (10/28-11/3)

By Casey Thomson
[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)

Al Roth – Nobel Prize Winner!

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.

Congrats again, Al! (Probably the best 4AM wake up call a person could get!)

Commentary from OPTN/UNOS Kidney Transplantation Committee Chair, John Friedewald

Related to Nikola’s post below on the proposed revisions to the deceased donor kidney allocation policy, Al Roth has posted some interesting commentary from OPTN/UNOS Kidney Transplantation Committee Chair John Friedewald (in response to a query on a list serve):

“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.