Bioethics, healthcare policy, and related issues.
Michael Gerson, Bush administration tool and terminal sufferer from Conservative Comprehension Disorder, continues his pattern of getting everything exactly backwards in his Washington Post-sponsored campaign of attacks on Barack Obama. The day after April Fool’s Day (he must have missed a deadline), Gerson published another misinformed screed, this one claiming that Obama is an “extremist” on abortion for opposing laws that would have sentenced women to death. As usual with Gerson and the forced-pregnancy crowd generally, almost everything he says is factually false, and a repetition of standard right-wing myths. The column consists of nothing more than Gerson and the Post carrying water for the organized anti-woman crowd by repeating their well-worn talking points verbatim, with no pretense of originality or reportorial integrity. (more…)
There is a terrible tension in healthcare - medicine, especially - between the use of expert knowledge to serve and heal those in need, and its use to aggrandize those with the knowledge and to control, mold, dictate to or torture those who fall into their hands. Knowing what can help another can easily be mistaken for “knowing what is best for them”, and historically has been so mistaken throughout the entire history of medicine as a profession. Today, it’s hard to hear the phrase “Doctor knows best” without an ironic smirk - the same smirk we conjure up for the parallel slogans of wrongheaded patriarchal oppression “Father knows best” and “Trust your government”. But it was not long ago that that slogan was the entirely literal creed of the most respected profession in Western society, and the work of challenging that creed and establishing the primacy of patient values and autonomy was lengthy and hard-fought. Its path was marked by the graves - quite literally the graves - of too many martyrs.
The most entrenched redoubt of medical power (though least well-grounded in research and knowledge) was psychiatry. Not only did the head-shrinkers lay claim to the most occult knowledge of human functioning and health, but they stood against a patient population that was inherently and societally almost unable to defend itself. Members of, possibly, the most severely and unsympathetically stigmatized stratum of society, mental patients were given no credence, and often had no recognized legal standing, to assert their own values and choices in treatment. And it is true that in many cases, patients with mental illness could not in fact act for their own interests or competently manage their own treatment and caretaking. But the presumption that no such patient could have a valid opinion about their own care, coupled with the prejudice that they were unfit for “normal” society, and likely dangerous, meant that virtually anything could be done to anyone, if advocated by a doctor armed with a diagnosis of mental illness. The things that were done were in many cases almost unthinkable.
Howard Dully spent over 40 years thinking about what was done to him. It took him a full life of hardship and failure to finally understand his own fate, and to come to terms with it. That anyone could have survived, let alone found peace and stability, after having lived his story, is an amazement in itself.
Dully is the author (with a professional co-writer) of My Lobotomy: A Memoir. The subject of the book is exactly what the title suggests. The story it contains is heartbreaking.
Dully’s life is difficult to summarize, except to say that it was unremittingly harsh almost from birth. Dully was born in California in 1948; his father was a hard and unemotional man who was driven to work excruciating hours, sometimes at as many as 4 or 5 low-skill physical labor jobs at the same time, partly by the need to support his family, partly by his own obsessive work ethic. Howard grew up a big kid (he’s now 6′7″, 350 lbs) who picked on his younger brother; when he was 4 his mother died after giving birth to a baby brother with a severe neurological deformation - the baby was placed with relatives and never spoken of again within the family. Howard and his family bounced around various friends’ and relatives’ homes as his father struggled to earn a living, and Howard suffered constantly both from missing his mother and from the severe discipline he suffered in some of these homes. Things really got bad when his father married again, to a woman with two sons of her own. Dully claims that she simply resented and hated him; from reading both his own stories of his home life, and some of his doctors’ notes, it is easy to believe he is correct. Howard, in the meantime, was legitimately a handful for any parent: he was apparently flightly and unreliable to an extreme degree, was aversive to school work, discipline, and hygiene, and often fought with his brothers, though they had a generally good relationship. As he got older he began doing stupid kid pranks - shoplifting and stealing items from cars, and playing hooky. As a huge and growing boy, he was constantly hungry, but was not allowed to eat between meals and was beaten for taking snacks. His step-mother also had some sort of obsession with her furniture and household trinkets, and would beat Howard for touching anything in the house, sitting on the parlor furniture, or using the front door. His step-mother would beat him for any infraction, and for things that weren’t infractions; later his brothers confirmed that she did indeed beat him for things she did not mind when done by her own sons, and would rave at him for no reason at all. When his father got home, he would get another beating - his father made him choose a piece of firewood to be beaten with, and Howard developed the skill of picking ones that were flexible enough to hurt less but strong enough not to break (which would encourage his father to continue the beating with his bare hand). Between his actual behavioral problems, his pre-adolescent awkwardness, the fact that his step-mother did seem to truly want him dead, and his father’s absence and emotionally and physically violent treatment, Howard seemed doomed to a life of misery no matter what might have happened. What actually did happen is unbelievable.
Howard’s step-mother apparently conceived the idea that she could get rid of Howard if she got the weight of professional opinion on her side. She began visiting a series of psychiatrists to complain about her son’s behavior, but none of them would agree he had to be institutionalized or removed from the home. Several wrote consulting notes to the effect that they were convinced her harsh treatment was the problem and that she should moderate her behavior toward the boy. She moved from doctor to doctor trying to find one that would agree with her. Finally she stumbled onto Dr. Walter Freeman.
Freeman was the pioneer, in the US, of the new treatment of psycho-surgery. He actually coined the word “lobotomy”, and popularized the use of that treatment in this country. He was the first US physician to see the procedure, after it was developed in Europe just before WWII; Freeman brought it back to the States and traveled the country in specially-modified vans or station wagons that he called his “Lobotomobiles”, giving demonstrations of both electro-convulsive therapy (using a machine he built himself; when it broke down, he simply held the bare wires against the patient’s head for as long as he felt was appropriate, with no mechanism for monitoring voltage or current) and lobotomy. According to the Dully, relating reports of academic researchers who studied Freeman’s career, Freeman was a constant self-promoter and showman: he would perform several lobotomies in a day, every day, in front of medical audiences, liked to demonstrate how easy it was by sometimes using ordinary household implements rather than surgical tools, and developed a signature two-handed bilateral technique in which he would insert “leucotomes” (the lobtomy knife) into both lobes of a patient’s brain and then simultaneously jerk them both through the tissue with a flourish. At times, his death rate ranged upward of 20%. Nobody seemed to think this was cause for alarm. Patients were operated on without their own knowledge or consent, and authorization was freely obtained from courts or patient guardians after reassurances from Freeman that the procedure would solve all the patients’ problems. Often, no precise psychiatric diagnosis was attempted before the lobotomy was performed; lobotomies were used for conditions ranging from headaches to schizophrenia. More than a few were performed on minors, even pre-teens; there were questions about such cases, but little organized opposition. Freeman was profiled in popular magazines, and sometimes hailed as a god, delivering sufferers from their misery. There were many detractors in the medical community, but the great benefit of lobotomy was that it often made patients docile enough to live with their families without monitoring, meaning they could be discharged from the large state mental institutions that were commonplace then. This made the procedure wildly popular with the managers of those institutions, whose patients had no effective representation to oppose the treatment plans made for them by others.
After a few years, Freeman heard about, and again pioneered, a variation of the lobotomy procedure called “trans-orbital lobotomy”, often referred to as “ice-pick lobotomy”. In that procedure, a long, sharp, thin instrument was pushed along the eyeball parallel to the nose, and through the back of the eye socket (”orbit”) into the skull, and into the frontal lobe of the brain. The instrument could then be levered back and forth, and up and down, to tear through the frontal lobes and disrupt their neural circuitry. There was no method for visualizing the exact placement of the instrument in the brain, or the location, depth, or extent of the lesions created; the method was simply to stick the metal rod in through the eye socket and wiggle it back and forth to tear the brain tissue randomly. The effect was almost as dramatic as an open-skull lobotomy, but there was no external wound, and it could be performed under mild anaesthesia. The procedure could be done in an ordinary doctor’s office, and took about ten minutes. In many cases, the surgical instrument used was, in fact, an ice pick. (Freeman’s personal lobotomy instrument was labled “Uline Ice Company”.) Patients were sometimes sent home afterward in a taxi cab.
Freeman began popularizing the trans-orbital lobotomy, sometimes performing as many as two dozen procedures a day on patients in mental institutions and hospitals. In some cases, patients were operated on against their consent; after the procedure, they lacked the drive and wherewithal to sue. After some years traveling the country in his Lobotomobile, he finally settled in the South San Francisco Bay Area, near where Howard Dully’s family were living. Eventually, Dully’s step-mother asked to see him.
Freeman met with her a number of times over a period of two months, duly recording her wild stories of Howard’s unmanageable behavior (some of which later turned out to be pure fabrications - such as the story that he had beaten his brain-damaged baby brother almost to death). From the beginning the step-mother openly solicited some kind of dramatic professional intervention. Freeman hesitated at first, insisting he would have to meet the patient and interview the other family members before coming to any conclusion. (What seems incredible is that he began formulating treatment plans with the mother for weeks before ever once meeting Howard.) He interviewed Howard’s father one time; the father gave a much more balanced report of Howard’s behavior, but Freeman didn’t pick up on the clue. He began to meet with Howard himself, and found him reasonably normal though somewhat uncommunicative (who wouldn’t be?). But he kept meeting with Howard’s step-mother, who still filled him with tales of how afraid she was of Howard, how her other sons were afraid of him and were constantly beaten up by him (they deny this), and finally how Howard had beaten up his baby brother in infancy (his entire family denies this - and note that the step-mother was not part of the family at that time). Freeman seems to have accepted everything she said, and viewed Howard’s truancy and other bad behavior through this fictionalized and delusional lens. After four meetings with the step-mother, only one meeting (ever) with Howard’s father, and four visits with Howard himself, Freeman recommended that they should attempt to “change his personality” with a trans-orbital lobotomy. Howard’s step-mother immediately agreed, and took the papers home for his father to sign, which he did without ever speaking to the doctor again. Freeman cautioned the parents not to tell Howard what would happen - only that he would be admitted to the hospital for “tests”. Howard excitedly looked forward to his night in the hospital, because he had heard they gave you Jell-O there. And they did. It was two weeks after his 12th birthday.
Freeman lobotomized Howard the next day. Howard has no memory of any of the events of that day. He contracted a fever and an apparent infection (Freeman was infamous for not sterilizing his instruments before surgery; you can see, in the actual photograph of Howard’s procedure, [see photo at end, below the jump] that he is not wearing gloves), but recovered soon enough.
The rest of his life was a disaster.
I met Robert Rummel-Hudson last night at his New York book party, celebrating the release of Schuyler’s Monster, his memoir of his daughter’s struggle to meet the challenges of having been born with polymicrogyria - a neurodevelopmental disease that prevents her from developing spoken language - and his own struggle to meet the challenges of parenthood and the demands imposed by his daughter’s condition. The book grew out of Rob’s gripping, heart-rending blog, Fighting Monsters with Rubber Swords.
Robert has been documenting, step-by-step, the pathway he, his equally-admirable wife Julie, and Schuyler (pr. “SKY-ler”) herself have followed, first coming to terms with Schuyler’s developmental difficulties, then battling the public schools’ broken and indifferent system for educating special-needs children until finally moving to a city (Plano, TX, of all places) that offered what Schuyler needed. At the urging of his growing base of enthralled fans and well-wishers, he turned the blog into a book that hit the market just this week. It has already received considerable word of mouth and small-market press attention even before release; I am convinced it is just about to explode into a real sensation, and deservedly so.
Robert has an ability to communicate the pathos and humor of his family’s situation, and even more strongly Schuyler’s unbelievably spunky and winning personality, and her brilliantly unique triumph over the multiple dirty tricks life has played her. Schuyler is without question the star of his blog (which, he says, she still has not read, nor has she the book, either, though she is fully aware that she is a media queen). It is impossible to read their story without falling in love with Schuyler (and indeed she is regularly showered with largesse by fans, often anonymous, who have visited the family’s Amazon wish-lists). “Schuyler has a posse!”, I told Rob, and he agreed that one of the most satisfying side-effects of blogging about her condition is that she has garnered such a wide-spread support base. That is due to Rob’s ability to make her come alive through his words - though it’s obvious Schuyler is giving him a lot of great material to work with.
In person, Rob comes across just as you’d imagine from his blog: funny, personable, thoughtful, fiercely dedicated to Schuyler and her needs, worried about her future, and laceratingly honest about his own uncertainties and shortcomings (which I think he overestimates). It was great fun meeting him, and I was glad to see the St. Martin’s Press staff just as enthused about the book as were the many fans who turned out to meet the author.
I mention all this simply to add this plug for a book that deserves to be read, and will break your heart and change your viewpoint when you have done so. I can’t communicate the impact of Rob’s blog or the book it gave rise to, but I urge everyone to experience them for themselves.
(1) Go buy this book:
(2) Go read this blog.
You can thank me later.
UPDATE: Fixed an editing mistake.
Joe Carter, rising star in the right-wing religious think tank milieu and blogger of the always-interesting Evangelical Outpost, makes one of his not-infrequent visits to fetus-fetish loopyland today. He contributes an overwrought and, basically, just kind of weird open letter to early-stage fetuses:
Let me begin by congratulating you on making it through the embryonic stage. Too many of our fellow humans don’t even make it as far as you have now. Many died of natural causes. Others were cut down prior to implantation by an abortifacient. Still others are trapped in the freezers of IVF clinics, in suspended animation awaiting their fate. . . .
He then offers “advice” to fetuses on how to avoid abortion (don’t have birth defects, don’t be part of an at-risk multiple pregnancy, etc.). Joe, it should be explained, is not dumb enough to think he can talk to fetuses. He just does it anyway. Naturally, all his “advice” to the fetus is really veiled criticism of the pregnant woman: for failing to carry three or more fetuses to term regardless of risk, for failing to have a child with birth defects, for being one of the roughly 0.04% of American women who pursue sex selection, or for having genetic-health preferences he doesn’t approve of.
Naturally as well, the piece goes to lengths to paint every possible alternative for a pregnant woman, except, notably, the one he approves of, as evidence of that woman’s depravity. He explicitly quotes the facts that:
Carrying three babies to term would more than double the woman’s risk of developing the most severe diseases of pregnancy, such as preeclampsia. The average triplet is born two months premature, significantly raising the risk of disabilities . . . .
But he excoriates the choice to reduce multiple pregnancies to avoid these risks. He characterizes the implantation of multiple embryos to increase chances of pregnancy (because of the high failure rates in IVF) as efforts “to save money” - but he previously harshly criticized Amy Richards, the subject of an infamous New York Times profile who had a selective reduction of her unplanned, accidental triplet pregnancy as well. So, not only is it immoral to subject yourself and your fetuses to the increased risk of multiple pregnancies, but it is also immoral to do anything about it if you do find yourself in that position. And, being unable to afford multiple rounds of IVF at $10,00 - $20,000 a shot is, of course, mere selfishness, but you’re forbidden to assert your own worth even if you didn’t pursue a multiple pregnancy “to save money”. (His pretended concern for the risks to the woman of a multiple pregnancy is clearly window-dressing; no woman is allowed to act to reduce that risk no matter how or why she encountered it.) You’re bad if you implant more than two embryos, you’re bad if you can’t afford not to, and you’re bad if you reduce the risks you face after stumbling through the previous two problems. In other words, taking any positive action to control your risks and outcomes according to your own values and desires is immoral.
The rest is just typical emotive fetus-swooning (”May our Lord have mercy on your poor fetal soul”; ” society has decided that it is better for you to be put to death”; “Your best hope is to pray and hope that others are praying for you too”) and woman-hating (there is not one reference to a woman’s “choice” that suggests there would be any positive benefit to her to control her own biological destiny; women’s autonomy is, literally, for Joe, nothing more than “the right to kill a fetus for any reason you choose” - not one of which such reasons he mentions or acknowledges might even exist). In none of the situations he mentions - birth defects, unplanned multiple pregnancies, risky pregnancies, genetic diagnosis - is there the slightest hint that being denied the right to control your own and your offspring’s future could be of any benefit. In every case, he picks what he considers the least defensible exercise of a woman’s choice not to carry a pregnancy - Down’s Syndrome, “squinting” - and mocks the very idea that anyone should be allowed to have preferences about the matter. More serious choices - Huntington’s Disease, Tay Sachs - are never mentioned, and clearly form no barrier to forcing women to continue a pregnancy against their will.
But what else would this be? I didn’t expect any sudden access of insight or empathy in such a post. I do find it useful to chart the clinical course of right-wing dementia, however. Now they’re talking to fetuses. What next? More importantly, is there an end stage, or are they all just going to wind up like Strom Thurmond, 100 years old, babbling like a banshee and yapping offensive remarks at women in their intermittent lucid moments? (OK - maybe this is the end stage. But how long can this go on?)
I need to play weaker defense.
That’s a conclusion I just now came to after struggling to understand my own reactions to things I’d been reading, and in particular to why everyone I’d been reading seemed so angry all the time. Since it seemed to me they didn’t have reasons to be so angry, there was apparently something wrong, and I was sorely tempted to put it right. I knew, too, that they wouldn’t appreciate my assistance in encouraging them not to be angry about the things they were angry about, and then they would be angry at me, which really wouldn’t be fair.
So, before even attempting to help all those angry people realize they were wrong to be so angry, I’m already [more of] the asshole [than usual] - supposedly. And that makes me angry, so I began devising all these imaginary ripostes to the as-yet-only-potential criticisms I knew I would get for helping the angry people see things my way. And the more I thought about the issues at hand, the more I had to defend myself against attacks from people I was only trying to straighten out for their own benefit, to the point that this defensiveness defined my understanding of the issues - making myself right was the test of the correctness of the positions I took. The more tenacious my defensiveness became, the harder it was to understand what all the angry people were saying except in ways that automatically made them wrong, so I could be right.
Clearly, Tenacious D is a considerable mind-fucking auto-petard that one might best be rid of if one hopes to understand others in non-assholish ways.*
* Yes, it’s also the name of the worst rock-’n-roll band in the entire world, including all the French ones.
“Blue”, of The Gimp Parade, has an interesting post on the differing reactions non-disabled people have to the disabled in different contexts, and on the expectations they seem to have for how the disabled are “supposed to”, or are allowed to, look to non-disabled eyes.
I’ve been thinking a lot lately about what people with disabilities look like and how it influences our interaction with the nondisabled in public. What disabled people are supposed to look like is part of the interaction too. . . .
Anyone who has experienced both limping and using a wheelchair will tell you that public reactions to the two appearances differ. Same with manual chair versus power chair, white cane versus guide dog, invisible impairment versus visible one(s), and, Ballastexistenz claims, with dog versus sans dog for her as a person with autism. Visual differences cue stereotypes, and breathing on one’s own versus towing a ventilator on my scooter also makes a discernible difference. Most notably, even fewer people are willing to make eye contact. . . .
Okay, so I know it’s fear of difference and the old “there-but-for-the-grace-of” thing. And that’s fed by a history of segregation and institutionalization. I’m 37, by the way, and Americans in wheelchairs who are my age are pretty much the first generation allowed to attend public school with everyone else.
There was some head-squeezin’ taking place over my recent claim that many disabled persons believe “life with a disability is no more to be denigrated than life without one”. It’s just obvious to many people that having a “disability” makes your life objectively worse than otherwise, and presumably makes you objectively less happy than you would be without the disability. (A particularly stark example of this took place in an infamous encounter between utilitarian ethicist Peter Singer and disability activist Harriet McBryde Johnson, who uses a wheelchair, in which he insisted - against her objections - that having a “disability” was simply objectively worse than having some mere life difficulty such as being a victim of prejudice. I have always wondered at this in Singer, who, though controversial, is not usually unempathetic - at least, he feels chickens’ pain pretty intensely.) Seeing the disabled as “the disabled” makes it very hard not to respond to them in a way that foregrounds both the disability (rather than the person) and the observer’s interpretation of its significance.
This is an especially strong intuition for progressives for whom “helping the needy” is both a natural inclination and an inherent good (implicitly requiring that “being needy” is less good than not having a need, whereby one is “helping” by removing the need). Yet many people with disabilities would deny both that disability is necessarily an objective harm and that it necessarily makes them unhappy. Simultaneously, they are accutely aware of what is difficult for them that is not for those who do not have their disability, and many seek whatever aid is available - including medical treatment - to lessen that difficulty. Grasping this dichotomy is an important part of bringing disability into the range of human norm, and “the disabled” into the community of caring that progressives seek to build.
An old article by Mary Johnson that I just stumbled across in Ragged Edge Online asks why liberals “don’t get it” on disability rights:
During the debate over Terri Schiavo last fall, disability activists and scholars groused about both right-to-life and right-to-die advocates not understanding disability rights issues. . . .
It’s “downright weird,” says Michael Bérubé, whose 1996 book, Life As We Know it,about raising disabled son Jamie, became a bestseller.Bérubé calls liberals “oddly reluctant to see disability rights as part of a program of egalitarian civil rights.” . . .
Many leftists, says writer Marta Russell, simply think there is no movement; some believe the disability rights movement is too small to qualify as a real “movement.” There are more substantive reasons as well. “Some leftists don’t believe disability is an oppression that belongs on a theoretical par with race, gender or class. They may think disabled peoples lives are difficult and social justice lacking but they don’t see basic underlying institutional relations at work when it comes to disablement.” . . .
“I wish they understood that it was civil rights,” says Cyndi Jones, head of the Center for An Accessible Society. “Talk to progressives or liberals (which I use interchangeably): they just don’t see it as civil rights.” . . .
Jones talks about attending progressive media conferences and being the only one there concerned with disability rights. “They never think about making sure the meeting site is accessible, either,” she says. ” When you complain, though, you’re seen as a ‘whiny cripple.’”
An activist invited to be on a liberal talk show on public television finds the producer resisting the need for a sign-language interpreter, even when the activist offers to pay the cost. A progressive bookstore owner provides a ramp to a locked entrance and offers a doorbell; he is offended when local activists protest the segregated treatment. Liberals involved in election reform organize to stop new accessible computerized voting machines, arguing that they’re open to fraud.
These are good points.
Online Beeb has an interesting article on the debate over euthanasia in the UK. They quote Len Doyal as coming out in favor of active euthanasia, which their headline bills as some sort of shocker (readers of medical ethics literature will know this is not a new or even especially rare position to take - it has just been backburnered in the public debate on end-of-life care). The real point of interest to me was the breadth of opinion now being openly bandied about. Another interesting point is my recognition that some parts of that range of opinion are new, at least on the public stage, and some people or organizations that uphold what were once radical positions have been forced into opposing others who are now going further than those so-called radicals feel comfortable with.
All of which is by way of saying that there may be something to this slippery-slope business after all.
Saw the X-Men movie this past week, and was struck by how explicitly the “biological deviance” theme was brought out in the plot. Of course, that is the main driver of plot tension throughout the three movies (and to some degree in the original comic books, I gather, though I haven’t read them). But, even more so than in the first two movies, the third installment delves into the bio-politics of “normalcy” and prejudice, in interesting, though somewhat complicated, ways.
It’s a juicy subject for a worthwhile discussion, and a welcome sign in these days of otherwise unbridled bigotry and repression.
There is much buzz about a just-released report in the clinical journal Neurorehabilitation, which reports a case study of three patients, reportedly diagnosed with long-term persistent vegetative state, who were returned to full consciousness for a number of hours with doses of zolpidem, the medication in the sleeping pill “Ambien”. Clinicians and ethicists are warily interested; the “pro-life” blogosphere, of course, is uncritically beside itself over the news:
End the Madness: PVS is reversible or misdiagnosed [Pro-Life Blogs]
PVS is reversible and often misdiagnosed [HyScience]
Important News: Drug ‘Reverses’ Vegetative State [BlogsforTerri]
Rise and Talk [Premature Terminal Delivery]
Holy Cow! Patients in PVS Awakened by Sleeping Pill [Wesley J. Smith]
etc.
The Terri Schindler Schiavo Foundation has already demanded a moratorium on terminations of treatment for all patients in PVS on the strength of this report, as has their easily-misled former spokesperson, Pamela Hennessy.
As a follow-on to the below post on PIGD in England, Pro-Life News reports on the same story and then comments (complete with misspellings and scare quotes):
Doctors tested embryos created by the woman and her “partner” using in-vitro fertilisation (IVF) methods for the cancer gene. Only unaffected embryos were implanted in her womb, the newspaper said. But it is not reported how many babies the so call “doctors” killed in the screening proucess.
It will surprise no one, I’m sure, that this makes not the slightest sense.
Glen McGee reports on this development in genetic diagnosis: England’s HFEA (national assisted-reproduction policy-making body) has finally agreed to authorize pre-implantation genetic diagnosis (”PIGD”) for some known cancer-linked genes (apparently BRCA1 & 2), but the genes in question are patented by a commercial corporation, Myriad, who flatly refuse to license the testing. So the regulatory barrier has been removed, but it is still illegal to perform tests which, presumably, patients want, and that could give them knowledge of a child’s predisposition to breast or ovarian cancer, because a commercial license-holder has decided unilaterally not to allow it.
I have blogged previously on the dangers of patents for ordinary genome sequences; this seems to be as stark an example as you could ask for. Basic information about people’s health status and prognosis is being withheld from them, deliberately, by an uninvolved third party acting under property rights law, of all things. Are people’s values and freedom ever going to be taken seriously in the healthcare arena?
A group of occupational-medicine physicians has released a white paper on the issue of disability certifications for impaired workers, holding that doctors often keep workers off the job too long after an injury or illness and that the specialty should adopt a “Stay at Work/Return to Work Process” as its fundamental organizing model for treating disability. That process seeks to minimize the time workers spend off the job, which, the authors assert, would be beneficial in many ways:
We know that much work disability is not required from a strictly medical point of view. We see devastating psychological, medical, social, and economic effects caused by unnecessarily prolonged work disability and loss of employability. We also see wasted human and financial resources and lost productivity.
Finding better ways of handling key non-medical aspects of the process that determines if an injured or ill person will stay at work or return to work will improve outcomes. Until now, the distinct nature and importance of the stay at work and return to work process (SAW/RTW) has been overlooked. Improvements to that process will support optimal health and function for more individuals, encourage their continuing contribution to society, help control the growth of disability program costs, and protect the competitive vitality of the North American economy.
This may all be true, but it causes concern nonetheless. Without comment, these authors introduce multiple factors into their outcome evaluation which are not related to, and in fact may conflict with, patient welfare. They say explicitly here, and throughout the paper, that the benefits of encouraging workers to take less time off the job for disability-related reasons include, among other things, harm to the “economy” (GDP, presumably), “contribution to society”, reduced costs of disability treatments, and worker productivity. In other words, among the major drivers for doctors to determine the course of individual patients’ care are the contributions those patients can make to overall economic goals valued by their employers, third-party healthcare payers, or “society”, not the patients themselves.
To put that another way, these authors are openly encouraging doctors to admit external economic values (in addition to the many that already impact treatment decisionmaking) to directly influence their decisions regarding their patients’ recovery from illness or injury - values that run directly counter to the patients’ own. There may be a problem there.
This story from England strikes a familiar chord: a doctor has assisted a woman well beyond the typical age of fertility to undergo an IVF pregnancy; critics claim he should not have done so because it smacks of “selfishness” and because “it would be extremely difficult for a child to have a mother who is as old as a grandmother”. Art Caplan said much the same thing in a column about a year ago: “it was wrong because there was a terrible price to pay for using reproductive technology [in the case he discusses].”
I’m uneasy about this, in a lot of ways.
Jay Sennet posts his “Trans[sexual] Political Agenda” - a cri du coeur on the subject of outsiders’ cluelessness about the lives of those with non-normative gender status or identity.
A criminal category for prisons and mental health institutions that stop hormones of inmates.
He do like to stir shit up.
Frank Bowe, long-time disability rights activist, has some useful ideas about strategizing by disabled communities for the upcoming US mid-term elections. The issue requires some subtlety because, as he points out, the disabled community is not as politically monolithic as many other “interest groups”, and so has less political clout as a body and is less easily approached or categorized by politicians seeking support.
Bowe tries to identify themes and issues of common interest to all in the disabled community, and offers a basic primer on electoral activism and on making connections with other communities with common interests. His post sets me to thinking about ways that other healthcare-interest communities could benefit from similar efforts. We surely need effective strategies in this benighted time.
There’s a difficult termination-of-treatment case getting attention in England that I think, in some ways, illustrates the right way to go about dealing with these issues, as well as the frustrating complexities they present. It’s refreshing, at least, to see an intelligent discussion of quality of life, futility, and resource prioritization take place among parties who all seem sincere, informed, and rational. In the US, the same case would have religious fanatics picketing the hospital and threatening judges’ lives, while screaming ignoramuses spouted nonsense on talk shows and posturing right-wing politicians hijacked the case for their own ends. As difficult as these matters are, proof that they can be dealt with carefully and on the merits is a welcome surprise.
Almost a year ago, Art Caplan waded into the prenatal genetic testing arena with this variation on an old trope: “Would you allow Bill Gates to be born?” I’m a bit slow on these things, so I’m just getting around to answering him. (And my answer is: given how screwed up my Windows computer system is, I’d abort Gates right now if I had the chance.)
Caplan muses:
If you could go back in time and stop the birth of the world’s most famous nerd, would you?
You probably answered my question with a “no.” Whatever Gates’ sins may be, he is the father of a computer revolution that has brought much good to many people throughout the world. Add to that achievement his current generous philanthropic activities supporting some very worthy causes, such as vaccine research and a center for autism research in Seattle, and the case for having Bill with us becomes pretty persuasive. . . .
But what if I told you it’s possible that Gates has a medical condition that accounts, in part, for both his tremendous achievements and for his “nerdiness?” Gates is widely reported to display many personality traits characteristic of a condition known as Asperger’s syndrome. Asperger’s is a mild version of autism, a more serious condition that renders many children unable to talk, be touched, communicate or socialize. While I certainly do not know if Gates has Asperger’s, his difficulties in social settings are nearly as legendary as his genius, so it’s possible. . . .
The drive for more genetic tests continues unabated. Undoubtedly the genes for autism and Asperger’s will soon be found. When they are, my question — would you have stopped Bill Gates from existing? — will take on a very real meaning.
Fewer geniuses?
There are many in the autism and Asperger’s community, like the newly formed Aspies for Freedom, who worry that the minute a genetic test appears, it will spell the end for a lot of future geniuses, like Gates. Maybe there will be fewer Thomas Jeffersons or Lewis Carrolls — remarkable thinkers who also fit the profile for Asperger’s.
(First, let me say that I am both wary of and uncomfortable with this business of “diagnosing” psychological or medical conditions in famous figures on the basis of a few imagined personality traits. I don’t think there is any reliable evidence to base a claim that Gates has Asperger Syndrome - observations about his “difficult personality” are no more than long-distance stereotyping. I also think it’s an abuse of professional insight to broadcast such claims, whether or not reliable. I have no great sympathy for Gates, but it’s still rude and insensitive to make remarks like this, and in some circumstances - public figures, for instance - it can be quite dangerous.)
I find it odd to see Caplan endorsing this line of reasoning. It’s an old one, most commonly found in anti-abortion arguments, and notoriously weak; Caplan should know better. To put it simply, if the argument against preventing certain births (by abortion, IVF embryo culling, genetic engineering, or what have you) is the utilitarian one that some people with the target condition could turn out to be great geniuses, the counterargument is that they could just as well turn out to be great villains. Medical testing does not give us diagnostic precognition (and if it did, we would undoubtedly choose to abort only the villians - making the case for doing so even stronger). Since there is no way to know that certain births will turn out to be greatly utilitarian for the world, there is no weight to an argument that we should not prevent them for that reason. (Another implication of this argument is that we should not practice birth control, and in fact should attempt to have as many children as biologically possible - since any child not conceived could be a lost genius just as much as any embryo not gestated. Unless we think we are really obligated to become desperate breeding machines seeking the inventor/entrepreneur jackpot that is the apparent raison d’etre of human reproduction, we are entitled to not to have any child we choose.)
Another problem is that this argument ties the anti-[whatever] stance to the utility of the births in question (something that even most Utilitarians - autonomy-loving libertines that they are - would not do). Thus it seems to imply that it is OK to systematically prevent births that are socially disadvantageous - perhaps not in cases of Down Syndrome, or Aspberger Syndrome, or what have you, but in other more severe cases. This is almost invariably not what the “anti-’s” have in mind, and apparently not what Caplan has in mind in raising fears of genetic euthanasia.
The “anti-” argument has got to be made on other grounds. The strongest argument is the pro-autonomy one: that the lives of people with [whatever condition] are just as rich and valuable to them as the lives of people without it; there is no reason to deprive them of life for their own good (that justification virtually never works, since virtually nobody would prefer the alternative for their own good), and you may not deprive someone of life purely for someone else’s good, so they may as well live. (To put that more simply: the lives of people with “disabilities” - however we may conceive that term - are almost always a net positive benefit to them - they do still want to live; thus, the only reason not to let them live would be to benefit someone else, which we normally say we cannot do.) This argument falters when you consider that the lives that are going to be ended are not those of persons with the condition in question, but of embryonic non-persons who have no interests to take into account. Ending the life of an adult person with [whatever condition] who still wants to live would be a grave injustice, but ending the life of an embryo that is not a person, and wants nothing at all because it has no consciousness, is no harm at all, and so is permissible. The response to this argument is that systematically eliminating all births with the chosen condition is tantamount to genocide - to casting the existing generation with that condition adrift by not letting any new members of their “community” arrive - essentially declaring war on people with that condition not by attacking them directly but by genetically cutting them off as a barren community. And, finally, the response to that argument is that there is no obligation on the part of prospective parents to have any particular type of child simply so that others like that child will have a thriving community. (There we will have to let the argument stand for now. It’s a vital topic, but not for this post.)
Whether or not there is a good “anti-” argument against systematic elimination of embryos with a given “disability”, the point is that doing so directly harms no living person. Harms to imaginary future persons, in the sense that they do not come into existence, are of no moment. (An embryo that is aborted “suffers” just as much as one that was never conceived, or one - say, the hypothetical offspring of Benjamin Franklin and Britney Spears - that never could have been conceived. We are not morally obligated to any of these non-persons.) And so I am puzzled to imagine what Caplan - or the many who share his fears - are upset about. The “future genius” argument that Caplan foregrounds is absurd, and the “discrimination” argument makes no sense - not least because, at the early-embryo stage, there is no one there to be discriminated against.
We may well worry about the world we create in seizing domination over our own genetics, but the problems to be feared come not from the fact that certain imaginary people will not come into being. The real problems are the familiar dysutopian scenarios - clone armies, Delta-minus worker slaves, complacent feudal drudges, raving military savages, universal genetic conformism, loss of hybrid vigor - that threaten from attempting to manage a planned genetic economy. These are possibilities to be considered, and avoided by proper planning. (How do you avoid the danger of a clone army? Don’t make one!) But that is something we can do - something that does not depend on diagnostic precognition to prevent us aborting hypothetical geniuses, or equates not having a child with a given condition to killing another person with the same condition.
The FDA has instituted a much-publicized “voluntary” program, involving manufacturers, doctors, and - whether they like it or not - patients, aimed at preventing birth defects resulting from use of Accutae (isotretinoin ) for severe acne.
[A]s of the beginning of this year, the companies that make isotretinoin, together with the Food and Drug Administration, have imposed mandatory prescribing rules. Any woman of childbearing age who is given the drug must meet several requirements. Before starting the medication she must have negative pregnancy tests two months in a row. While taking it, she must either promise in writing to abstain from sex with a man or else use two forms of contraception, one of which must be a highly effective kind like birth control pills or the injectable Depo-Provera. Each month during her treatment (usually five months) she must take a pregnancy test. And she must document every step she takes by logging onto iPledge, a national online database.
The new rules are meant to prevent isotretinoin-related birth defects once and for all. But the rules are so strict, some doctors say, they might discourage or even prevent many patients from using the drug, the only treatment that can erase severe acne. Many dermatologists say the iPledge program is overkill.
“It’s one of the worst things that’s happened to our specialty,” said Dr. Ranella Hirsch, a Boston dermatologist who is the vice president of the American Society of Cosmetic Dermatology & Aesthetic Surgery. “We’re taking a very good drug that is for many people the only real choice out of reasonable access.”
The risk is real: first-trimester fetal isotretinoin exposure often causes a suite of severe birth defects including hydrocephaly, microcephaly, cleft palate, mental retardation, and developmental abnormalities; it often causes spontaneous abortion or infant death. Prior to the “iPledge” registration program, Accutane access was controlled through an aggressive patient-education program that involved repeated pregnancy testing and a sticky label placed on prescriptions to indicate to pharmacists that testing had been done and the patient was not pregnant. The program significantly reduced pregnancy rates among the user cohort, but not to zero. Mama’s Health has a good summary of the best available study on the matter:
Shortly after the Pregnancy Prevention Program began, Roche sponsored a survey of women taking Accutane to assess compliance with the program, and the company encouraged doctors to enroll patients. Run by the Slone Epidemiology Unit at Boston University’s School of Public Health, the survey set out to track pregnancy rates and outcomes, patients’ awareness of risks, and patient and physician behavior.
Of the 500,000 women enrolled in the Slone survey from 1989 to 1998, there have been 958 pregnancies, 834 of which were terminations (either elective, spontaneous or due to ectopic pregnancies), 110 that resulted in live births, and 14 patients that had unknown outcomes. Of the 60 infants with available medical records, eight had congenital abnormalities. Since Accutane’s approval, Roche has received close to 2,000 reports of Accutane-exposed pregnancies, 70 percent of which occurred after the PPP began.
According to FDA, exactly how well the PPP has worked is unclear. Experts say the PPP is a significant program that has prevented many pregnancies and is the first of its kind initiated by a pharmaceutical company. Roche has made extraordinary efforts to educate patients that they must not become pregnant while taking Accutane, says a Roche spokesperson.
At a September 2000 meeting of FDA’s Der