National Academies on Gene-Drives

Why would you read all the coverage of the National Academies Gene-Drives report when you could actually read the report itself? My thoughts will appear here later, after I've read the report itself.

Sometimes It Snows In April

Click on the title to link to "Sometimes It Snows In April," my favorite Prince song. A bioethics song. Lovely.

King v. Burwell and Obamacare

If you're at all concerned with the possibility that the Supreme Court may shortly deprive tens of thousands of people of their (recently-acquired) federally-subsidized health insurance, you should look at this post by Timothy Jost on Balkinization, detailing the contents of the amicus briefs that put the anti-Obamacare forces (I think) to shame. And then look at this Wall Street Journal story, and this one, and this amazing piece from Mother Jones, about the four "plaintiffs" in the case, who have little to no idea of the position "their" lawyers are taking on their behalf, and in at least one case don't seem to even know that they're plaintiffs. The plaintiff's legal theory is pathetic, the lawyer's supposed named plaintiffs are frauds--and yet it's actually possible that the Supreme Court might endorse the theory to protect those plaintiffs.

John Roberts can work as hard as he wants to protect the reputation of the Supreme Court as non-political, but if they decide against the US on this one, they will have no credibility left at all.  

Debate on Physician Assisted Suicide

Here's a debate on Physician Assisted Suicide at higher than the normal level of discourse. Enjoy!

Bioethics at Yale, Encyclopedic Edition

I just got my copy of the hefty new six-volume edition of the Encyclopedia of Bioethics. The Editor-in-Chief, Bruce Jennings, and two of the six Associate Editors (me, Mark Mercurio) teach at Yale. One of the two Consulting Editors (Joe Fins) is visiting at Yale this term. Another of the Associate Editors (Greg Kaebnick) is at The Hastings Center, with which Yale has a research alliance and a joint visiting-scholar program. Just sayin'.

Out of the Frame and Into the Gutter: Graphic Novels and Health Justice

A while ago I shared with you this wonderful cartoon from Comic Nurse, alias MK Czerwiec. Now let me share with you this symposium, Out of the Frame and Into the Gutter, brought to you in part by Comic Nurse. Thanks, Comic Nurse! If you're near Columbia on the afternoon of April 4, learn what graphic novels can do for health and social justice!

No Aid in Dying In CT This Year

The Public Health Committee of the Connecticut Legislature has no plans to bring an Oregon-style bill for Aid-in-Dying (aka physician-assisted suicide) to the floor of the legislature for a vote, in spite of 61% public support for the bill. Serious opposition by religious groups and by disability activists have kept legislators from moving the bill forward. But, the failure of the Aid-in-Dying bill seems to have resulted in some substitute enthusiasm for a Medical Orders for Life-Sustaining Treatment (MOLST) bill for Connecticut. (Some states call MOLST "POLST," for Physician Order for Life-Sustaining Treatment. It's the same thing.) Under MOLST, terminally-ill patients and their physicians can frame orders to be entered onto the patients chart, from "do everything" to orders restricting intubation, antibiotics, resuscitation, ventilation or artificial feeding; such orders would be legally binding on all caregivers. It's like an advance directive on steroids, because it's both an expression of the patient's desires and a physician's medical order in the patient's chart.

End-of-Life Planning, Roz Chast Edition

Please, please go read this wonderful and moving and honest cartoon about, among other things, why we don't do end-of-life planning, by longtime and beloved New Yorker cartoonist Roz Chast. Really, go read it. 

Criminalization of Drinking While Pregnant in UK?

A council on northwest England plans to bring legal action to establish liability for criminal damages by women who drink while pregnant, with resultant damage to their newborns. A tribunal in 2011 had ruled that a child had sustained personal injury "directly attributable to a crime of violence," and so was eligible for a payment from its mother. The holding came in spite of the fact that the mother had never been criminally convicted. The court simply held that, regardless of the lack of prosecution or conviction in her case, she had in fact committed the crime of maliciously administering poison so as to inflict grievous bodily harm, a crime under section 23 of the Offences Against the Person Act 1861. The upper tribunal of the Administrative Appeals Chamber reversed the holding, however. (The opinion can be downloaded here.) The Appeals Chamber agreed that there had been “administration of a poison or other destructive or noxious thing, so as thereby to inflict grievous bodily harm,” but found that the fetus who was damaged by the mother's drinking was not a "person" in legal terms at the time of her injury. The case now goes to the Court of Appeal.

It's important to recognize that the case at bar would set precedent for cases quite unlike it in the future. In the case at bar, adoptive parents of a child damaged by fetal alcohol syndrome are seeking payments from the child's biological mother--payments due them pursuant to criminal law. But if drinking-while-pregnant is criminal, the ordinary case of prosecution in the future may look rather different. It will involve not payment of damages by a biological mother to a third-party adoptive parent, but imprisonment of a new mother shortly after her child's birth.

Criminalization of drinking-while-pregnant seems like a terrible idea. It is obviously true that drinking while pregnant can damage one's fetus. It is also obviously true that the majority of women who drink while pregnant do not thereby damage their fetuses. The relevant studies seem to show no genuinely "safe" level of drinking during pregnancy, but also show that significant drinking during pregnancy often results in no harm to the fetus. In these circumstances--and given the addictive nature of alcohol--can it really be true that criminalization of drinking-while-pregnant is really the best, or even a reasonably good, method of reducing harm to fetuses from maternal drinking?

Criminalization will make it difficult for pregnant women to speak to their physicians or nurses about their drinking habits. Threat of criminal prosecution for drinking could be used as a lever against pregnant women by abusive men. Criminalization will subject visibly-pregnant women not only to prosecution, but also to public abuse and accusations from strangers, even though the actual danger to fetuses from moderate later-term drinking is minimal.

Women should be informed of the dangers to their fetuses of drinking. Alcoholic pregnant women should be offered help. The state's money is better spent on public service announcements and counseling sessions than on prosecutions and jail-cells. I'm guessing that no one who knows that drinking during pregnancy might damage her child, but who drinks anyway, does so with malicious intent, or does so without regard to the dangers to her child. People who don't know the damage they may be causing, or who simply cannot stop their drinking due to addiction, need help rather than punishment.

Friday Frivolity, Throatie Edition

State Vaccination Exemption Policy Makes A Difference

Mother Jones has just run a very nice analysis of recent years' research on state laws governing non-medical exemption from childhood vaccines. It turns out that if a state makes it very easy for parents to exempt their children from recommended school vaccinations for non-medical reasons, lots of parents will exempt their children. This causes loss of herd immunity, and children die of childhood diseases that haven't been common for decades. And when one state (Washington) tightened up its rules by requiring a doctor's signature for exempting children from vaccination, exemption rates fell by 40%.

Meanwhile, cases of measles are on the rise in California--more than half of them involving children who were intentionally not vaccinated.

Ventilating the Dead: Jahi McMath Update

Nailah Winkfield, the mother of Jahi McMath, the girl who was declared brain dead on December 11 of last year but who is being kept on ventilation and artificial feeding in an undisclosed location, has authored a letter to the general public about her daughter's condition. In the letter, she says that her daugher is "much better" physically and that she sees changes in her condition "that give me hope." She also hopes that Jahi's story will change the way the world thinks about brain death.

I'm very sorry for Ms. Winkfield, and cannot imagine the anguish she suffered when her 13-year-old died as a result of what was meant to be a routine tonsillectomy. Nonetheless, I sincerely hope that Jahi's tragedy does *not* change the world's mind about brain death. Brain death is a useful and important criterion for determining death in the modern hospital setting where machinery can prevent the cessation of breathing and heart activity. The permanent, irreversible lack of upper and lower-brain activity also seems to me to be the very essence of death, since it signals the deceased's complete and permanent lack of experience in and relation to the world. The fact that a dead person can be kept oxygenated is indeed useful for organ harvesting and transplant; but to keep a person oxygenated after the complete cessation not only of mental life but also even of brain-stem-coordinated automatic activity seems to me at best a very sad exercise in false hope. Harsh as it seems, I think it's also a waste of valuable resources. And most importantly, it mistakes a person for her body. Persons are bodies, to be sure; but they are more than that, fundamentally more. I'll admit to struggling with line-drawing here; my father remained father to me even after he was demented and in many ways no longer the person he once was. And certainly he remained a human being with preferences and experiences. He wouldn't have wanted to live in that state, but my mother (for example) did want him alive, even in that state. But brain-death is a more thorough kind of absence, a more complete dissolution, than mere dementia. I reduces a person to a collection of living and interdependent but non-coordinated and gradually dis-integrating cells and systems. Ms. McMath's life is over; and the end of her story has already been written, even if it takes months to arrive. I wish Ms. Winkfield her peace, but I remained convinced that she has been driven by love and hope and faith into making a terrible, though terribly human, mistake.

Your Short-Order Stem Cells May Not Have Arrived After All!

A few weeks ago I blogged about a Japanese researcher's piece in Nature, in which she claimed to have induced pluripotency in mouse blood cells simply by immersing the cells in an acid bath for a half-hour.  It now emerges that the researcher, Haruko Obokata, may not have done this after all. The RIKEN center in Kobe announced on Friday that it is investigating "alleged irregularities" in her work. Questions have been raised about the use of duplicate images across several of her papers, and about numerous unsuccessful attempts to duplicate her results. Obokata is not answering press inquiries. The jury is very much still out: the failures to duplicate her results may simply be due to the complexity of her protocol and the character of the particular cells she used. The business about duplicate images may simply have been a mistake. Read the latest from Nature on the matter, and stay tuned.

Bioethics Poetry, Another Dannie Abse Edition

A DOCTOR’S REGISTER

And yet God has not said a word!

“Porphyria’s Lover,” R. Browning

Half asleep, you recalled a fading list

of girls’ sweet names. Now to old women

these names belong—some whom you tumbled and

     kissed

in summer’s twilit lanes or hidden by heather.

You were a youth who never stayed long

for Gwen or for Joyce, for Rita or Ruth,

and there were others too, on a lower register.

Then, suddenly, a robust, scolding voice

changed your dream’s direction and the weather.

“That much morphia, doctor? Wrong, wrong.”

Surprised to discover your eyes still shut

you wondered which dead patient or what

(whose accusing son and when?) as any

trusted doctor would who did not murder

any pleading one with sovereign impunity.

“I found a thing to do,” said the lover

of Porphyria. Porphyria? Awake you add

the other pretty names too: Anuria,

Filaria, Leukaemia, Melanoma,

Sarcoma, Euthanasia, amen.

Dannie Abse

Bioethics Music, Military Bearing Edition

Lyrics are here.

Health Insurance Execs Watch Patient Battle Cancer

This story from The Onion, which is a parodic source of "news," is really funny.


What makes it especially funny is that it's so far-removed from the truth. Really. Far-removed. Really. I swear. Hardly true at all.

Wolves and Rivers

This is amazing.

US IVF Conceptions at All-time High

1.5% of babies born in the US in 2012 were conceived via IVF, according to data just released by the Society for Assisted Reproductive Technologies. Transfers of multiple embryos were down compared to previous years, but the average number of embryos transferred was still 1.9 for women under 35, and higher for older women. An old piece of mine at the Hastings Center Forum on the relationship of US insurance law to multiple-embryo transfers is still available here; it dates back to the Octo-mom story, but its point is still relevant. The rough punchline is, if you don't insure people for assisted reproduction, folks who can only afford one expensive try at having children will opt for multiple-embryo transfers, both in order to enhance their chances at successful implantation and in order to achieve a whole family at one go. This, naturally, results in multiple births--which are considerably more risky both for mom and for kids than are singleton births.   

Euthanasia in Quebec?

Quebec legislators are reportedly within days of passing a law that would permit euthanasia for competent adult patients with incurable disease which causes constant and unbearable physical or mental suffering. The euthanasia-related portion of Bill 52 (an English-language copy of which can be download here) seem modeled on euthanasia laws in Europe, in that it requires a diagnosis of incurability rather than of terminality, and explicitly ties access to euthanasia to suffering. A person is eligible to receive a physician's aid in dying only if he or she "suffer[s] from an advanced state of irreversible decline in capability; and suffer[s] from constant and unbearable physical or psychological pain which cannot be relieved in a manner the person deems tolerable." The term "aid in dying" is not actually defined in the bill, presumably in order to leave methodology in the hands of physicians.

Euthanasia is illegal according to Canadian national law, and it's not clear that the Quebec provincial law's alternative reference to "aid in dying" will skirt that national prohibition. Parti Quebecois officials are reportedly thinking of simply asking Crown officials not to prosecute euthanasia within Quebec after the law passes.

The bill covers a great deal of ground in addition to the euthanasia innovation. It creates a provincial commission to gather information on end-of-life care, establishes a regime for the creation and registration of advance directives, and addresses the provision of hospice and palliative care.

The bill has attracted a fair bit of high-profile opposition from groups of physicians, from the Catholic Church, and from some bioethicists. Here's a piece on the slippery-slope argument ("Soon we'll be killing children and the demented, just like in Belgium") being advanced by prominent conservative Canadian bioethicist Margaret Somerville.

New Lungs from Scrap Lungs

Researchers at the University of Texas Medical Branch have announced that they've successfully grown fresh human lungs from tissue borrowed from damaged lungs. Researchers took lungs that were too damaged to be used in transplant, and stripped all cellular material from them, leaving a sort of "lung scaffolding." They then took live lung tissue from another non-transplantable lung and put it on the scaffolding, and "fed" the cells with a bath of nutrients that "looks alot like Kool-aid" in an aquarium purchased from a local pet-shop. The cells from the second lung "colonized" the scaffolding, and generated a complete lung in only three days. The hope is that this technology will greatly decrease the shortage of organs for transplantation. But actual transplantation is 5 to 10 years in the future. The lungs need to be tested (probably in pigs) for function, ability to grow, robustness, and so on.