Iain Brassington, over at the Journal of Medical Ethics blog, has posted a nice response to my post, IVF Babies at Enhanced Risk. But Why, and So What? In that post I raised the question (based on Derek Parfit's non-identity problem) whether an IVF baby born with a disability has any right to complain, since that baby would not exist if it weren't for the IVF which resulted in the disability. This argument seems logical to me, but it also troubles me, because it often seems capable of proving too much. I gave the example of the slave, to whom (in the right circumstances) one might plausibly argue, "You have no right to complain of being a slave, since without the institution of slavery you would never have been born." Another similarly-structured argument might be addressed to animals being bred in awful conditions by agri-business: "You have no right to complain, little piggy, because if it weren't for this horrific factory farm, you wouldn't exist at all." (Of courses, both the slave and the animal would have grounds for complaint if their lives were so wretched as not to be worth living--but that's a high (or a low) bar.
Iain suggests a couple of ways to think about the problem. One involves the idea that the non-identity argument is weakened if it's at least possible that the very same person could have been born without the complained-of injury. The very same person might have been born not a slave. But I think that's fiddling with the hypo. If we're talking about the person who owes his existence to the institution of slavery because, for example, his mother met his father only because they were sold to the same plantation, I don't see what leverage is gained by arguing that it's at least metaphysically possible that the same person could have been born outside the peculiar institution.
More promising, to me, is Iain's suggestion that an IVF baby might have been harmed, but not wronged, by being born, just as the slave of a benevolent master would still be wronged by the institution of slavery, even if she has not been harmed by it. This leaves us with the question, when we debate about the existence of a complaint "from a particular person's point of view," are we talking about complaints of wrongdoing, of harm, or (as in tort) only of harmful wrongdoing?
Finally Iain tries to distinguish the case of the disabled IVF baby from the case of a baby harmed in utero (as when mom drinks, or ingests Thalidomide). The second sort of baby, Iain argues, would clearly have a complaint about the harmful behavior, because the very same baby might have been born unharmed.
But as I said briefly in my comment to Iain's post, I'm not so sure that personal identity is genetic at root. I don't think it's too much to argue that the disabled baby is a different person from the genetically-identical baby that would have been born but for mom's behavior. So the non-identity problem is not solved by reference to continuity of genetic makeup, or even by reference to bodily continuity with the same blastocyst.
Thursday, January 30, 2014
Johnson and Johnson To Share Raw Drug/Device Data Through Yale
A Johnson & Johnson subsidiary has entered into an agreement with Yale School of Medicine's Open Data Access (YODA) Project permitting YODA to review requests from investigators and physicians seeking access to anonymized clinical trials data relating to J&J pharmaceutical products. Aggregate and granular data are included, right down to anonymized individual patient and study-subject medical records. YODA will have authority to make final decisions regarding data sharing. J&J is also committed, in the future, to sharing its data on consumer products and medical devices. J&J's press release on the new initiative is here.
This is a big deal. Independent researchers will be able to scour and re-crunch all the J&J data, looking for side-effects or sub-population effects of drugs, comparing previously unpublished data to data from outside sources, and so on.
What's particularly novel here is that J&J has given up control of its data to the Yale group. Yale can decide to release data to researchers even if they anticipate findings that are negative for J&J. In contrast, GlaxoSmithKline has a limited data-sharing plan controlled by the firm. Requests that they deny are sent to arbitration. The J&J/YODA deal--struck between Harvard med-school classmates Harlan Krumholz of YODA and J&J chief medical officer Joanne Waldstreicher--is considerably more open.
This is a big deal. Independent researchers will be able to scour and re-crunch all the J&J data, looking for side-effects or sub-population effects of drugs, comparing previously unpublished data to data from outside sources, and so on.
What's particularly novel here is that J&J has given up control of its data to the Yale group. Yale can decide to release data to researchers even if they anticipate findings that are negative for J&J. In contrast, GlaxoSmithKline has a limited data-sharing plan controlled by the firm. Requests that they deny are sent to arbitration. The J&J/YODA deal--struck between Harvard med-school classmates Harlan Krumholz of YODA and J&J chief medical officer Joanne Waldstreicher--is considerably more open.
Wednesday, January 29, 2014
Your Short-Order Stem Cells Have Arrived!
A Japanese research team has discovered a way to render somatic cells (in this case, blood cells) pluripotent, simply by bathing them in acid for under a half-hour. The pluripotent cells were generated in a mouse model, and when injected into a mouse embryo, contributed to all three of the developing embryo's tissue-types. They also exhibited stem-cell like growth capacity when cultivated with growth factors. The team are calling their creation STAP stem-cells, for "stimulus-triggered acquisition of pluripotency." The new method involved no nuclear transfer and no introduction of transcription factors.
If the method works in humans, it could be the key to practical regenerative medicine. A person in need of replacement pancreatic cells, for example, might be able to give blood or other tissue to scientists who could then, very quickly, create pluripotent cells from them, and then develop these into replacement tissue which would not be rejected by the recipients body.
This story in the New Scientist has a lot of excellent detail, but includes a side allegation that an unnamed collaborator of the researchers permitted some STAP cells to grow into "spherical clusters" and then implanted one of these into a mouse uterus. According to the story, a researcher's "understanding" was that the collaborator's experiment resulted in the creation of an embryo. The unnamed collaborator hasn't commented. This would be a big deal, as it would indicate that STAP stem-cells were actually STAT stem cells (totipotent, not just pluripotent), and it would constitute an embryonic cloning without nuclear transfer.
If the method works in humans, it could be the key to practical regenerative medicine. A person in need of replacement pancreatic cells, for example, might be able to give blood or other tissue to scientists who could then, very quickly, create pluripotent cells from them, and then develop these into replacement tissue which would not be rejected by the recipients body.
This story in the New Scientist has a lot of excellent detail, but includes a side allegation that an unnamed collaborator of the researchers permitted some STAP cells to grow into "spherical clusters" and then implanted one of these into a mouse uterus. According to the story, a researcher's "understanding" was that the collaborator's experiment resulted in the creation of an embryo. The unnamed collaborator hasn't commented. This would be a big deal, as it would indicate that STAP stem-cells were actually STAT stem cells (totipotent, not just pluripotent), and it would constitute an embryonic cloning without nuclear transfer.
Tuesday, January 28, 2014
Monday, January 27, 2014
A Well-Regulated Militia Being Necessary...
Okay, so we knew that almost 3500 youths under 21 were killed by gunshots annually, and that gunshot wounds accounted for 21,000 emergency room visits each year. What we didn't know was that, quite apart from deaths, 20 American kids were hospitalized each day from gunshot wounds.Sure, guns guarantee our liberty, to some extent. But is our right to defend ourselves with firearms against the fully-mobilized Army of a futuristic dictatorial US, or against the black helicopters of the new One World Government, really so important that we can't risk some regulation (background checks, limits on use of guns by mentally ill people, lock boxes) to try to save the 3500 deaths and 7300 hospitalizations of youth we're experiencing each year now?
Labels:
gun control,
gun deaths,
gun injuries,
One World Government,
Pediatrics
Silencing Hospital Alarms
There's a great story on NPR today about a Boston hospital's success in reducing random alarm noise. In major part by giving nurses authority to adjust devices alarm settings based on what they knew of patients' conditions, a single hospital unit was able to reduce alarm noise from 90,000 beeps per week to only 10,000.
Why is that good? First, the incessant beeping of monitoring and other devices is very annoying to patients and staff alike. Second, too much beeping--about 350 beeps per patient-bed per day!--can induce alarm fatigue, causing staff to miss the really important signals when they occur. The Boston Globe attributed about 200 deaths over 5 years to alarm fatigue; the Joint Commission has reported 98 alarm-related sentinel events in a 3.5 year timespan, resulting in 80 deaths and over a dozen instances of permanent disability. The Joint Commission has therefore recently published new standards relating to alarm safety. It turns out that a lot of that beeping is really unnecessary; the Joint Commission has cited industry estimates that between 85 and 99 percent of hospital alarms aren't clinically actionable.
A paper on the Boston's hospital's alarm experience is here. A special alarm-safety issue of Horizons magazine (published by the Association for the Advancement of Medical Instrumentation) is here.
Why is that good? First, the incessant beeping of monitoring and other devices is very annoying to patients and staff alike. Second, too much beeping--about 350 beeps per patient-bed per day!--can induce alarm fatigue, causing staff to miss the really important signals when they occur. The Boston Globe attributed about 200 deaths over 5 years to alarm fatigue; the Joint Commission has reported 98 alarm-related sentinel events in a 3.5 year timespan, resulting in 80 deaths and over a dozen instances of permanent disability. The Joint Commission has therefore recently published new standards relating to alarm safety. It turns out that a lot of that beeping is really unnecessary; the Joint Commission has cited industry estimates that between 85 and 99 percent of hospital alarms aren't clinically actionable.
A paper on the Boston's hospital's alarm experience is here. A special alarm-safety issue of Horizons magazine (published by the Association for the Advancement of Medical Instrumentation) is here.
Sunday, January 26, 2014
Infertility Funding in the UK
The UK's National Infertility Awareness Campaign has published the results of its recent audit of infertility-treatment provision in the UK. The UK's own National Institute for Health and Care Excellence (NICE) recommends providing 3 full cycles to IVF to women under 40 who have not conceived after two years of unprotected intercourse or 12 cycles of artificial insemination. But the Awareness Campaign's audit shows that, for funding reasons, 73% of Clinical Consulting Groups in the UK do not offer treatment up to the NICE guideline standard. Of the 198 Clinical Consulting Groups that do offer some funding for IVF, 49% offered only one cycle and another 24% only two. Only 24% of the CCGs that fund IVF actually offer all three recommended cycles.
Swedish Womb Transplant Update
One of the nine women who received uterus transplants in Sweden earlier this year has now had a fertilized embryo transferred into her body. The embryo is from the woman's own egg, so if it implants and if she can carry to term, the resultant baby would be her genetic child. The woman suffered from MRKH syndrome, which prevents proper uterine development but does not affect ovaries or eggs. The donated uterus came from the woman's own mother, so if the procedure works, she would not only be the first woman to bear a live child with a donor uterus, but also the first woman to bear a child with the uterus from which she, herself, earlier emerged.
Labels:
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embryo,
organ transplantation,
Sweden,
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uterus
Brain-Dead Texas Woman Removed From Ventilator
At 11:30 this morning, the dead body of Marlise Munoz was disconnected from mechanical ventilation. Munoz, who has been brain dead for weeks, was being kept ventilated by a Texas hospital, over her family's objections and against her own previously-stated wishes, on grounds that she was pregnant. On Friday a court found that the Texas Advance Directives Act, which prohibits removal of "life support" from any pregnant "patient," did not apply to a dead person; the judge gave the hospital until Monday at 5 to appeal or to remove the mechanical supports from Munoz's body. As of the close of business yesterday, hospital officials were still saying they weren't decided; but apparently the decision was made this morning, much to the relief of the Munoz family.
My coverage of the court decision, with greater legal detail and links to court documents, here. Earlier coverage here, here and here.
My coverage of the court decision, with greater legal detail and links to court documents, here. Earlier coverage here, here and here.
Saturday, January 25, 2014
Pass Me That Kidney! Indian Edition
The Hindu is reporting the successful completion of India's largest ever "domino" kidney transplant: a chain of transplants in which A's relative donates a kidney to B, B's relative donates one to C, C's to D, and so on, until (in this case) F's relative completes the chain by donating a kidney to A. 12 patients (6 donor-recipient pairs) were operated on. Doctors at Johns Hopkins did a similar set of procedures in 2009. Physicians in Mumbai completed a 5-family domino donation last year; an earlier attempt at a 5-family donation failed when one of the 5 prospective recipients died. In 2012, doctors in 11 different American states completed the largest domino donation chain ever, involving 30 donor-recipient pairs.
Labels:
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Court Orders Vent Removed From Brain-Dead Pregnant Woman
A Texas judge has ordered a hospital to remove Marlise Munoz, a brain-dead pregnant woman, from mechanical ventilation. Munoz was being kept ventilated against her husband's, her parents' and her own previously-expressed wishes because the hospital believed it was legally obligated to provide life-support to her fetus under the Texas Advance Directives Act. The Act prohibits removal of "life support" from any pregnant "patient." The court found that the Act did not apply to persons who are legally dead. The court's order is here. The parties' stipulation of facts, including that Munoz is brain dead and that her fetus is not currently viable, is here. Munoz's husband filed an affidavit with the court, describing his wife as rigid-limbed, smelling of death, and having a soulless look in her eyes. His attorneys had earlier described the fetus as developing abnormally, and today in court accused the hospital of using Marlise Munoz as "a science experiment" and as a "dysfunctional incubator."
The hospital, which has until Monday at 5pm to comply with the order or file an appeal, is considering its options.
Earlier posts on the Munoz matter are here, here and here.
The hospital, which has until Monday at 5pm to comply with the order or file an appeal, is considering its options.
Earlier posts on the Munoz matter are here, here and here.
Friday, January 24, 2014
Bioethics Poetry: Peter Everwine Edition
At the Playground, Singing for Psychiatric Outpatients
The bright-faced children have gone home,
trailing the sun to supper.
Tonight,
these others have come,
almost sweetly shy, starched
for their monthly party.
Nurse herds them into metal chairs.
I've come to sing, Nurse tells them,
and they fold their hands
--these lately mad who failed behind a door
or slipped under in a jammed street,
whose eyes blossomed like silver
fists in mirrors, in plate-glass windows.
Nurse is waiting for me.
So I sing for them,
for the boy
in the front row, groping
the stiff corners of his pockets;
for the ugly one in pink anklets
--her legs have never felt a razor,
though her wrist has; for him
whose fingers are eaten by ants; for her
whose face sags like a torn sack.
They do not like my songs,
but infinitely polite, they turn
their smiles up into the dark
as if a smile should fall softly,
obliquely, like rain.
"Home on the Range," Nurse calls out,
her sure fingers on the pulse of America.
I start in faltering voice,
half-forgetting those dead words
sung at campfires in the past.
One joins, and then another:
Home, home on the range. . .
Where the deer. . .
And the skies are. . .
The voices crack and lurch, we
are singing--the boy, the ugly one--
singing like crows in the empty
prairie of a children's playground
where if there are distances that shine
they shine like the eyes of pain.
Peter Everwine
Thursday, January 23, 2014
Ventilating the Dead, Continued
Though she is brain-dead, Marlise Munoz is being kept ventilated against her husband's, her parents', and her own previously-expressed wishes. The Texas hospital where she is being kept argues that this course of action may be required by the Texas Advance Directives Act, which makes it illegal to disconnect any "patient" from "life-support"--if that patient is pregnant. Munoz was 14 weeks pregnant when she died; her fetus is now 22 weeks old. A hearing tomorrow should determine whether ventilation of the dead counts as "life support" under the Act, and whether a dead person is a "patient." Meanwhile, her husband's attorneys point out that the fetus suffered from the same lack of oxygen that destroyed Munoz's brain:
"According to the medical records we have been provided, the fetus is distinctly abnormal," the attorneys said. "Even at this early stage, the lower extremities are deformed to the extent that the gender cannot be determined." The attorneys said the fetus also has fluid building up inside the skull and possibly has a heart problem.
"Quite sadly, this information is not surprising due to the fact that the fetus, after being deprived of oxygen for an indeterminate length of time, is gestating within a dead and deteriorating body, as a horrified family looks on in absolute anguish, distress and sadness," the attorneys said.Previous posts on Munoz here and here.
Wednesday, January 15, 2014
Attention: Your $1000 Genome Has Arrived
With the unveiling by Illumina of its Hi Seq X combination of machines yesterday, we've now got the technology to sequence a human genome for $1000. The $1000 genome has been an industry goal for some years now, and seemed tantalizingly close last year. But now, it seems, it's arrived. Sequencing at that price level (the current level is $10,000) will, of course, make sequencing much more common. Goodbye, genetic privacy. Hello, debates about data control and access. Everyone better go read the Presidential Commission for the Study of Bioethical Issues's new report on incidental findings. We're going to have quite a few.
Tuesday, January 14, 2014
India Eradicates Polio
Monday marked India's third year without any new polio cases, so the country will soon be WHO-certified as having eradicated the disease. Meanwhile, in neighboring Pakistan, where the disease is still rampant, Taliban are executing vaccinators as possible spies. This is apparently because the US used a fake vaccination program as cover for its search for Osama bin Laden. Aagh!
Labels:
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India,
Osama bin Laden,
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public health,
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WHO
Ventilating the Dead: Update
The Fort Worth Star Telegram is reporting that the family of Marlise Munoz, the pregnant brain-dead woman who is being kept ventilated against the wishes of her family, will sue the John Peter Smith hospital to get her removed from the machinery. The hospital has kept Ms. Munoz on the machinery for weeks, citing the Texas Advance Directives Act, which states that no one can withdraw or withhold "life sustaining treatment" from a pregnant patient. The crucial legal question is whether the statutory restriction can properly be applied to treatment which is not "life-sustaining," because the patient in question is dead. (Family members have said that they've been told Ms. Munoz is brain-dead, but the hospital has made no official statement confirming this.) A hospital spokesman said the hospital was "encouraged" by the lawsuit "because the courts are the appropriate venue to provide clarity, direction and resolution in this matter." That sounds to me as if the hospital's position may be wholly liability-driven, and they're just looking for the safety of a court ruling to justify stopping the mechanical intervention. On the other hand, the hospital's outside council is reportedly one Neal Adams, who led a drive to end abortions at the hospital in 1988 and serves on the advisory board of the Northeast Tarrant Right-to-Life Educational Association, so perhaps more than liability is driving the hospital's position.
Earlier post on this case and on the Jahi McMath case in California here.
Read more here: http://www.star-telegram.com/2014/01/09/5473242/family-of-pregnant-brain-dead.html?rh=1#storylink=cpy
Read more here: http://www.star-telegram.com/2014/01/09/5473242/family-of-pregnant-brain-dead.html?rh=1#storylink=cpy
Earlier post on this case and on the Jahi McMath case in California here.
Read more here: http://www.star-telegram.com/2014/01/09/5473242/family-of-pregnant-brain-dead.html?rh=1#storylink=cpy
Read more here: http://www.star-telegram.com/2014/01/09/5473242/family-of-pregnant-brain-dead.html?rh=1#storylink=cpy
Monday, January 13, 2014
New Mexico Judge Finds State Constitutional Right to Aid-in-Dying
A judge in the New Mexico Second Judicial District Court (County of Bernalillo) has found that "the liberty, safety and happiness interest of a competent, terminally ill patient to choose aid in dying is a fundamental right under [the Due Process clause of the] New Mexico Constitution." District Judge Nan G. Nash therefore found that the state's criminal law against assisting in suicide is unconstitutional insofar as it is applied to aid-in-dying for competent, terminally-ill patients. The court's order enjoins prosecution of physicians for aiding competent terminally-ill patients in dying. From the opinion:
The court explicitly declined to distinguish aid-in-dying from suicide: "Through the practice of aid in dying a physician deliberately aids the terminally ill patient in taking of his own life, bringing the practice of aid in dying within the definition of assisting suicide contained in [the criminal law]." But the court went on to find a constitutionally-protected right to suicide for competent, terminally-ill patients, and therefore invalidated the criminal law against assisted suicide insofar as it is applied to doctors assisting in the suicides of such patients.
The case was brought by the ACLU of New Mexico and Compassion & Choices on behalf of two physicians and a terminal cancer patient.
This Court cannot envision a right more fundamental, more private or more integral to the liberty, safety and happiness of a New Mexican than the right of a competent, terminally ill patient to choose aid in dying. If decisions made in the shadow of one’s imminent death regarding how they and their loved ones will face that death are not fundamental and at the core of these constitutional guarantees, than what decisions are? As recognized by the United States Supreme Court in Cruzan “[t]he choice between life and death is a deeply personal decision of obvious and overwhelming finality.” Cruzan, 497 U.S. at 281.The opinion in Morris v. New Mexico only affects prosecutions within Bernalillo County; it will not apply to the whole state unless it is affirmed on appeal by the state's Supreme Court.
The court explicitly declined to distinguish aid-in-dying from suicide: "Through the practice of aid in dying a physician deliberately aids the terminally ill patient in taking of his own life, bringing the practice of aid in dying within the definition of assisting suicide contained in [the criminal law]." But the court went on to find a constitutionally-protected right to suicide for competent, terminally-ill patients, and therefore invalidated the criminal law against assisted suicide insofar as it is applied to doctors assisting in the suicides of such patients.
The case was brought by the ACLU of New Mexico and Compassion & Choices on behalf of two physicians and a terminal cancer patient.
Womb Transplants in Sweden
A team of surgeons in Sweden have transplanted donated uteruses into 9 women who were born without them, or who had lost them to cervical cancer. The aim is to permit the women to bear their own children. From the story:
Perhaps more troubling is the question of how the pregnancies will proceed. Will the developing fetuses be affected by the anti-rejection drugs the women are taking? What happens if rejection occurs part-way through a pregnancy? Will the uteruses be strong enough to carry the fetuses to term safely? Will placental formation and blood flow be sufficient to ensure the fetuses are healthy? At what stage and for what reasons will pregnancies be terminated?
If pregnancy is achieved, doctors plan to remove the uteruses to prevent the women's having to take anti-rejection drugs for life. (The drugs can have serious side-effects.) Two earlier attempts at human uterine transplantation (using uteruses from dead donors) failed: one in 2000 in Saudi Arabia, which had to be abandoned when a blod clot formed; and another in Turkey last year, in which the pregnancy failed at 2 months. Uterine transplants have been done in mice, sheep and baboons, but the baboon transplants did not result in pregnancy.
An American team announced its intention to perform a uterine transplant some years ago, raising some ethical issues, but no such procedure has yet been performed in the US.
"The transplant operations did not connect the women's uteruses to their fallopian tubes, so they are unable to get pregnant naturally. But all who received a womb have their own ovaries and can make eggs. Before the operation, they had some removed to create embryos through in-vitro fertilization. The embryos were then frozen and doctors plan to transfer them into the new wombs, allowing the women to carry their own biological children."There are several ethics issues here, clearly. First, there's the danger to the donors of the uteruses. Doctors said they preferred live uterus donors to dead donors because they could be certain, with live donors, that the uteruses were functioning properly and didn't have any problems like HPV infection. But the uterine donation is a major surgery--more dangerous than a hysterectomy, since it involves removal not only of the uterus but also of surrounding blood-vessel needed to keep the uterus alive in the donee. The procedure thus subjects donors to serious risk for the sake of a donation that isn't lifesaving.
Perhaps more troubling is the question of how the pregnancies will proceed. Will the developing fetuses be affected by the anti-rejection drugs the women are taking? What happens if rejection occurs part-way through a pregnancy? Will the uteruses be strong enough to carry the fetuses to term safely? Will placental formation and blood flow be sufficient to ensure the fetuses are healthy? At what stage and for what reasons will pregnancies be terminated?
If pregnancy is achieved, doctors plan to remove the uteruses to prevent the women's having to take anti-rejection drugs for life. (The drugs can have serious side-effects.) Two earlier attempts at human uterine transplantation (using uteruses from dead donors) failed: one in 2000 in Saudi Arabia, which had to be abandoned when a blod clot formed; and another in Turkey last year, in which the pregnancy failed at 2 months. Uterine transplants have been done in mice, sheep and baboons, but the baboon transplants did not result in pregnancy.
An American team announced its intention to perform a uterine transplant some years ago, raising some ethical issues, but no such procedure has yet been performed in the US.
Thursday, January 9, 2014
IVF Babies at Enhanced Risk. But Why, and So What?
This Australian study in PLOS One shows significant risk of health problems in babies born from assisted conception as opposed to spontaneous conceptions. Compared to spontaneously-conceived singletons, singletons from assisted conception
were almost twice
as likely to be stillborn, more than twice as likely to be pre-term,
almost three times as likely to have very low birth weight, and twice as
likely to die within the first four weeks after birth. Outcomes varied by type of assisted conception. Very low and
low birth weight, very preterm and preterm birth, and neonatal death
were "markedly" more common in births from IVF and, to a lesser
degree, in births from ICSI. Use of frozen embryos elminated the risks of ICSI, but not of IVF. But frozen embryos also had increased risk
of macrosomia.
The study mentions, but doesn't linger on, data showing that kids spontaneously born of parents with untreated infertility problems also have adverse outcomes compared to kids of non-infertile parents. Compared to spontaneously conceived children of women with no infertility problems, spontaneously conceived children of women with infertility problems were nine times more likely to have very low birth weight, seven times more likely to be very pre-term, and almost seven times more likely to die within the first 28 days of birth. Some experts say that this may mean that the problems experienced by children of assisted reproduction may be more due to parental infertility than to infertility treatment.
Let us leave aside the possibility that many or most IVF-related risks are really just infertility-related risks. The sort of data discussed in this study always brings to my mind some variations on the "non-identity" problem invented by Derek Parfit. Suppose a child of IVF is born with low birthweight, and experiences lifelong significant complications which were foreseeable by the parents when they decided to used IVF. Has that child any complaint against the parents? One possible answer is, "No, because the condition of the possibility of that particular child's ever existing at all was his or her parents' use of the IVF which caused both his or her existence and his or her low birthweight. Only a child whose life was so wretched as to literally not be worth living could complain about his or her parents' use of IVF." The argument in this form seems sound but it also troubles me, because (for example) one can easily imagine the circumstances in which one might accurately say to a slave, "You have no right to complain about being born a slave, because without the institution of slavery, you would never have been born at all."
If IVF is risky, and a child of IVF is born with a disability, and the child would not have been born without IVF, what sort of complaint can one mount, from the child's point of view, about the disability?
The study mentions, but doesn't linger on, data showing that kids spontaneously born of parents with untreated infertility problems also have adverse outcomes compared to kids of non-infertile parents. Compared to spontaneously conceived children of women with no infertility problems, spontaneously conceived children of women with infertility problems were nine times more likely to have very low birth weight, seven times more likely to be very pre-term, and almost seven times more likely to die within the first 28 days of birth. Some experts say that this may mean that the problems experienced by children of assisted reproduction may be more due to parental infertility than to infertility treatment.
Let us leave aside the possibility that many or most IVF-related risks are really just infertility-related risks. The sort of data discussed in this study always brings to my mind some variations on the "non-identity" problem invented by Derek Parfit. Suppose a child of IVF is born with low birthweight, and experiences lifelong significant complications which were foreseeable by the parents when they decided to used IVF. Has that child any complaint against the parents? One possible answer is, "No, because the condition of the possibility of that particular child's ever existing at all was his or her parents' use of the IVF which caused both his or her existence and his or her low birthweight. Only a child whose life was so wretched as to literally not be worth living could complain about his or her parents' use of IVF." The argument in this form seems sound but it also troubles me, because (for example) one can easily imagine the circumstances in which one might accurately say to a slave, "You have no right to complain about being born a slave, because without the institution of slavery, you would never have been born at all."
If IVF is risky, and a child of IVF is born with a disability, and the child would not have been born without IVF, what sort of complaint can one mount, from the child's point of view, about the disability?
Labels:
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ICSI,
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PLOS One,
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Medicaid Sterilization Policy Causes Unwanted Pregnancies
Here's an interesting article from the New England Journal of Medicine on Medicaid's policy regarding voluntary tubal ligation. Borrero et al. claim that Medicaid policy is preventing poor women who desire sterilization from receiving the procedure, resulting in tens of thousands of unintended pregnancies annually.
A surprising number of women desire tubal ligation immediately after giving birth; the procedure is conveniently done while they're still in the delivery room. More than 70% of sterilization procedures done within two years after delivery are in fact done in the immediate postpartum period.
Because of our nation's appalling experience with coercive and non-consensual sterilization of minority and poor women in the mid-20th century, however, the US government in the 1970s developed regulations designed to protect vulnerable women. Among these was a requirement for Medicaid patients of a 30-day waiting period between informed consent to sterilization and the actual sterilization procedure.
This well-intentioned regulation, unchanged since 1978, is today preventing women from receiving sterilizations that they actually desire. Some women request sterilization too late in pregnancy to fulfill the 30-day Medicaid waiting period; some are denied sterilization because they do not have their consent form present at the time of delivery; some give birth early, before the mandatory waiting period elapses.
The results of denial of sterilization services to Medicaid patients are very real. Almost half of women who are denied tubal ligation get pregnant within one year after delivery. The authors have found that "Medicaid-policy–related barriers lead to approximately 62,000 unfulfilled requests for postpartum sterilization annually, resulting in an estimated 10,000 abortions and 19,000 unintended births in the subsequent year...."
Both the financial and the emotional costs of these unintended pregnancies are very high. The authors estimate the cost to American taxpayers of the pregnancies at over $215 million annually. And wealthier, privately-insured women face no such policy barriers to receiving the sterilization procedure they desire. It might be time to revisit a policy that is harming the people it was originally implemented to protect.
A surprising number of women desire tubal ligation immediately after giving birth; the procedure is conveniently done while they're still in the delivery room. More than 70% of sterilization procedures done within two years after delivery are in fact done in the immediate postpartum period.
Because of our nation's appalling experience with coercive and non-consensual sterilization of minority and poor women in the mid-20th century, however, the US government in the 1970s developed regulations designed to protect vulnerable women. Among these was a requirement for Medicaid patients of a 30-day waiting period between informed consent to sterilization and the actual sterilization procedure.
This well-intentioned regulation, unchanged since 1978, is today preventing women from receiving sterilizations that they actually desire. Some women request sterilization too late in pregnancy to fulfill the 30-day Medicaid waiting period; some are denied sterilization because they do not have their consent form present at the time of delivery; some give birth early, before the mandatory waiting period elapses.
The results of denial of sterilization services to Medicaid patients are very real. Almost half of women who are denied tubal ligation get pregnant within one year after delivery. The authors have found that "Medicaid-policy–related barriers lead to approximately 62,000 unfulfilled requests for postpartum sterilization annually, resulting in an estimated 10,000 abortions and 19,000 unintended births in the subsequent year...."
Both the financial and the emotional costs of these unintended pregnancies are very high. The authors estimate the cost to American taxpayers of the pregnancies at over $215 million annually. And wealthier, privately-insured women face no such policy barriers to receiving the sterilization procedure they desire. It might be time to revisit a policy that is harming the people it was originally implemented to protect.
Wednesday, January 8, 2014
Bioethics Poetry: Amy Fleury Edition
Ablution
Because one must be naked to get clean,
my dad shrugs out of his pajama shirt,
steps from his boxers and into the tub
as I brace him, whose long illness
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Ventilating the Dead: Two Cases
Jahi McMath is dead as a result of a rare and tragic bleeding complication following what was supposed to be a routine tonsillectomy. There is no trace of electronic activity in her brain. By law, she is dead; on Friday California decreed that she had been dead since December 12. But she's dead more than just "by law." She has no feeling, no thoughts, no memories, no dreams, no experiences, no emotions, no responses--and no hope of ever having any of those things ever again. Thanks to mechanical intervention, her heart continues to beat and her body appears warm and life-like. Her parents, hoping for a miracle, went to court to prevent her medical team from removing the life-support machinery from her dead body. They lost the court battle, but found a California nursing facility willing to accept transfer of the dead girl, and to keep her body attached to machines. Presumably the nursing home will charge someone for this service, though it's not clear what state or private insurance would pay for medical care for a dead person. The parents have already received over $50,000 in private donations, but mechanical ventilation costs thousands per day. In any case, Ms. McMath's body will gradually deteriorate even on mechanical support. She is already described by her family's attorney as being in "very bad shape" after her transfer. "We don't know if she's going to make it," he said of the dead girl. "Her medical condition, separate from the brain issue, is not good."
Ms. Munoz collapsed with a pulmonary embolism and ceased breathing. By the time she was discovered by her husband, she had suffered profound brain damage. (Her fetus, which suffered the same lack of oxygen, is likely to be brain-damaged as well.) Her husband, father and mother all agree that Ms. Munoz would not have wanted to be kept on life support in these circumstances.
I wonder if Mike Huckabee thinks that in this case, we ought to respect parents over government and family over hospitals?
Enter former (and future?) Republican presidential hopeful Mike Huckabee:
The former Arkansas governor and ordained pastor began his Fox News show by admitting that he did not have the medical experience necessary to understand 13-year-old Jahi McMath’s condition but he encouraged her family to fight against any attempts to remove her from life support even though doctors said she technically "died several weeks ago.”In other words, "I don't know the facts but I know what to do." Thanks, Mike.
“Every life has value and worth,” Huckabee told his viewers on Saturday.But Ms. McMath is no longer alive, Mike.
“There is no such person who is disposable, one whose life has been deemed by others to be less than others and therefore expendable, I can’t share that.” He continued: “The road that starts that way in deciding that some lives have less value and are unworthy of protection, that leads to a culture that tolerates the undeserved killing of over 55 million unborn children in this country. It leads to China’s birth policy that limits the number of children for a family and enforces forced abortion if they deviate from the state-determined ideal....It’s also that culture that allowed the Nazis to to hideously justify the savage slaughter of millions of Jews, disabled people, old people and those with mental illness,” Huckabee said.Yep, declining to give medical treatment to corpses is just where Hitler started. Give them an inch....
“Let’s hope and pray that the courts continue to do what every court should do, respect parents over government, family over hospitals and, above all, protect Jahi from them all.”Meanwhile, in Texas, a hospital is keeping Marlise Munoz on mechanical ventilation against the wishes of her husband and her parents, and against her own previously-expressed wishes. The hospital is acting pursuant to the Texas Advance Directives Act, which prohibits withdrawal of life-support from any pregnant patient. But at least one doctor has declared the patient brain-dead, so the question arises: is a dead person a "patient"? Is mechanical ventilation on a dead person "life support"? Several legal experts, including two involved with drafting the Texas law, have opined in the press that if she is in fact brain-dead, the hospital is misinterpreting the law in keeping the woman attached to mechanical support.
Ms. Munoz collapsed with a pulmonary embolism and ceased breathing. By the time she was discovered by her husband, she had suffered profound brain damage. (Her fetus, which suffered the same lack of oxygen, is likely to be brain-damaged as well.) Her husband, father and mother all agree that Ms. Munoz would not have wanted to be kept on life support in these circumstances.
I wonder if Mike Huckabee thinks that in this case, we ought to respect parents over government and family over hospitals?
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