Bioethics, healthcare policy, and related issues.
There’s a great post up at Skepchick, discussing a supposed regimen for “natural” transexual procedures for female-to-male transitioning. Debbie Goddard (@DebGod) responded to a question from a writer who was approaching the FTM transition but was uncertain about surgery and hormone therapy, and had heard about a program of exercise and “natural” supplements similar to that used by “natural bodybuilders”. DebGod’s response and the discussion that ensued fascinated me. I encourage people to read it; then I’ll have some comments to make.
What got me onto this is that there’s just so much cool stuff in this post and the comments thread. I don’t have anything to say about the basic question of natural transitioning, but I want to point out several things that come up in the discussion.
First, it’s interesting that this post arose on a skeptic (i.e., atheist, anti-paranormal) site in the first place. Transexuality isn’t inherently an issue for skeptics, but the questioner identified as a skeptic and was apparently feeling vulnerable as both a transexual and a skeptic, so sought out a welcoming community. He found the right place: DebGod happens to be gender-queer, and is knowledgeable about transexuality and a former bodybuilder, and the community of readers was supportive. From some of the comments, it appears that many perceive the skeptical community as not uniformly welcoming for LGBTQ people – something I hadn’t known or expected. This post included some interesting discussion of LGBTQ issues among skeptics, and raises questions that – especially in light of the recent conflict over misogyny among skeptics (notably involving another prominent Skepchick poster) – I hope the skeptical community will take the opportunity to address.
More importantly, DebGod’s response is a model of careful and helpful analysis. She gives her own background, with appropriate disclaimers, then lays out the issues clearly and concisely. She notes red flags with the claims being made (no professional credentials, buzzwords, trademarked terminology, skeptical responses from people directly affected). She then reviews the suggested procedure, notes that it relies heavily on biochemical supplements, comments intelligently on their purity and efficacy, and discusses the vague distinction between “natural” and “non-natural” that the promoters take advantage of. She seeks information from a more knowledgeable source. Shen then concludes by running down all the issues this analysis raises, categorically, giving pros and cons for each and pointing out dangers. This is a really well-done, intelligent, well-argued analysis, at least as good as that commonly seen from Quackwatch or prominent skeptics like PZ Myers.
What I really like about DebGod’s analysis is that she is carefully value-neutral in all of this. Though it’s clear that there is much to be worried about in this suggested regimen, she never takes it on herself to make other people’s decisions for them. Her final statement is a clear and balanced sketch of the relationship between all the competing factors – health, personal goals, available support, and insurance or income – that influence a decision among the many different options for transitioning; she doesn’t declare any of them right or wrong for any individual, but makes it clear that each may be better or worse under different conditions. She includes just a single sentence offering her opinion that the “natural” process is too risky and low-benefit, but clearly identifies it as her own perspective and doesn’t insist that anyone else has to adopt it. She really gets her role as guide and analyst, as opposed to parent, judge, or dictator – something that so many culture-critic blowhards, and even many licensed professionals, can’t accept.
As she notes:
When it comes to gender identity and transsexualism, where you want to go, who you want to be, and how you want to do it is up to you, of course.
- a message that needs to be heard more widely, and not just regarding transexualism.
That leads to another issue that comes up obliquely, but importantly, in the comments. The medical community’s response to transexualism has been mixed, in ways that have generated a lot of resentment in the T/Q community even when the doctors and psychologists thought they were being helpful. For many years, transexuals seeking medical treatment in the US were commonly required to conform to the so-called “Harry Benjamin Standards of Care” (now the “World Professional Association for Transgender Health Standards of Care”), requiring extensive counseling and explicit authorization from multiple psychologists, and a set period of pre-treatment life in the transitioned gender, before professionals would agree to provide the requested treatment. Those standards have been eased but still exist. Many critics have pointed out that this is not only paternalistic but unnecessary – transexual patients have a higher level of success and satisfaction with their treatment than patients of many other conditions, including cosmetic procedures, that do not involve such heavy-handed gatekeeping. The professional societies – starting in the 1950s, when this work was extremely controversial – saw themselves as protecting patients and preventing harmful mistakes, while also going to lengths to provide treatments that more conservative caregivers would have prohibited in the first place. Patients, however, saw it as condescending, offensive, and wasteful of time and money. (Note that in other parts of the world, clinical standards for transexual therapy are much looser or non-existent; there is no known epidemic of regretful genderflippers.)
There are some very interesting comments from “natalie1984″ noting that the sex-reassignment gatekeeping system has been eroded in recent years, and along with it the stereotyped view of what it means to “really” be transexual or gender-dysphoric in the first place. Not only has therapy become more accessible, but what kind of therapy and what therapeutic endpoint the patient seeks have also been thrown open. As she notes: “Now we’re all able to simply work out for ourselves who we are and what we want from transition, and what will make us feel happiest”. She speaks with understanding of why many healthcare professionals are not current on T/Q issues, and simply encourages patients to find caregivers they are comfortable with. There’s also an interesting exchange further down the thread between her and one of the promoters of the natural therapy. She comes across as uncompromising but smart, thoughtful, and understanding.
There’s more, including the politics of gendered pronouns, but even just this adds up to a rich and complex discussion, with intersections between skepticism, healthcare autonomy, gender issues, and, vaguely, perhaps some philosophy-of-science stuff. What this post brings up for me is the deeply connected ways in which such issues always do surface in any similar debates over the proper application of facts to values – that is, the use of science or medicine to achieve chosen goals in human lives, and the conflicts that arise between those who control the science and those whose goals are at stake. It is common in ethics and philosophy of science to emphasize the “fact/value distinction”, but real cases often dredge up facts – and perceived facts – from many aspects of our lives, and competing values that arise from very different lived perspectives.
In this one issue, the skeptical community provides a useful mindset for analyzing clinical claims, but has also been charged with hostility to the LGBTQ community in whose interests those questions are asked. The “natural health” community offers the autonomy and self-direction that many patients want, but also harbors liars and scammers. The doctors who invented the sex-assignment gatekeeping system that so many transexual people hate did so as a way to make it possible for those patients to get care than had never previously been available. It is impossible for anyone to assert an exclusive claim to the moral or epistemological high ground here.
This stuff is hard, and, like so many progressive programs, requires a dedication to working through all the implications of a given position, and to striving to make one’s positions more defensible, more responsive, and more accepting. Every one of these communities – the skeptics, the healthcare professionals, the alternative-health promoters, and to some degree the LGBTQ population as well – have work to do in that way. Some of it has been done, though, and some of it is being done now, over at Skepchick. Good start.
The Huffington Post today breaks an original story on a long-running scandal at Columbia University Hospital, in New York, regarding lack of informed consent on a risky blood-volume-expander study. Heart-surgery patients were recruited into a study involving a new formulation of a volume expander that had been known to cause severe bleeding in its existing form; minimal information was provided in the consent form, some patients did not speak English, some were recruited in the ER under stressful circumstances, and the hospital IRB apparently did not adequately review the existing literature indicating the level of risk potentially involved. (Frustratingly, the story does not say what stage this experiment was conducted at, but it appears to have been a Phase I trial.)
At least two patients in the study died shortly after receiving the fluid and more than two dozen others required transfusions, according to documents submitted to the federal government by the hospital and obtained by the Huffington Post Investigative Fund.
There were attempts to rein in the problem as it developed:
In November 2000, two Columbia anesthesiologists – Marc Dickstein and Mark Heath- sought out the head of the institutional review board, Paul Papagni, a lawyer. They told Papagni that they had been in the operating room when a number of patients had hemorrhaged. They feared the study’s design virtually guaranteed that there would be more who would suffer hemorrhaging
However, their objections were derailed by internal politics. Columbia did later act decisively to crack down on the lead investigator, Dr. Elliott Bennett-Guerrero and report the breaches of protocol to the HHS, but they also downplayed the severity of the consequences, in part by reporting only a narrow range of outcomes from selected patients, not including the most severe adverse outcome, the bleeding that was the most important known side effect. The hospital also ignored advice from the HHS that it contact patients from the study and apprise them of the truth. Dr. Bennett-Guerrero has now been dismissed from the hospital (he landed in a Directorship and medical-school professorship at Duke – guess they’re OK with all this). Columbia has now been ordered by HHS to contact its former patients.
So, all in all, a serious problem plagued by misbehavior at every level, and an apparent partial coverup.
That’s all very worrisome, but it is the investigator’s attempted defense that particularly caught my attention:
Bennett-Guerrero . . . said in e-mails: “It is hard to imagine that an unbiased expert in cardiac surgery clinical trials could conclude that subjects were harmed in this study, since with only 50 patients per group the study was not designed or powered to prove any differences in major complications including death.”
What he’s saying is that because the sample size was so small, the statistical error in the results is necessarily mathematically too large to be able to show that the deaths or other events that resulted are clearly more numerous that would be expected by chance in such a group of patients.
There are a couple of real problems with this.
First, with a sample size of 50 and, as the article notes, varying dosages of the expander given, up to “three times the level recommended by the manufacturers”, this appears to have been a Phase I Ascending Dose trial. Phase I trials are conducted expressly for the purpose of monitoring safety and adverse side effects of the experimental treatment – they are intended to weed out unsafe treatments before they are tried on large groups of patients. In such trials, safety monitoring is paramount; the first sign of harm to patients should bring the trial to a halt. It’s true that such trial sizes are often too small for statistical significance, but the whole point is to gain confidence before exposing a larger sample size – so empirical monitoring is vital. In this trial, two patients died and numerous others suffered serious hemorrhaging – severe-enough outcomes that experienced clinicians complained directly to the IRB – but the lead investigator never reported a problem or stopped the trial.
(It is possible this was a Phase II or combined Phase I/II trial – though again the facts still seem to suggest Phase I. But if so, the sample size should have been large enough to be likely to return statistically significant results. The trial would be worthless without them.)
Another concern is that no early-Phase trial is supposed to be conducted on patients receiving conventional therapy or in lieu of conventional therapy, where such therapy exists. They are conducted on healthy volunteers. Partly this is to ensure that participation is truly voluntary (i.e., that patients are not being enticed into trials because they see it as a requirement for receiving other therapy), partly precisely to avoid this problem of contaminating apparent adverse consequences of the experiment with the patients’ underlying pathologies.
So it is difficult to see how this trial could have been appropriately designed, aside from the question of informed consent. Either it was a safety trial conducted on patients whose health was already compromised to the point that adverse effects could not be identified as the results of the experimental medication, or it was a dosage-efficacy trial conducted on a sample size too small to provide reliable results, either positive or negative. And in either case, clinical judgment seems to have been dispensed with as patients died but – because of the built-in lack of confirmatory mathematics – no suspicion was entertained about a possible link to the experiment they were participating in.
That raises questions of the investigator’s intent. At this point, I want to step away from this particular incident, and make it clear I am not making insinuations about Dr. Bennett-Guerrero or others from the Columbia trial. Clearly things went badly there but I don’t know what was going through his mind or what his intentions were. I want to use this situation to illustrate ways in which clinical trial design can be (again, I am saying nothing about this particular case) manipulated to evade ethical protections for subjects.
If a trial is deliberately designed with a sample size too small to return significant results, then by definition no negative results can ever be discerned (nor can any positive results, either, of course). At the Phase I level, where harm is the only reported result, lack of positive results is not a problem, but the impossibility of negative results means that the candidate drug will automatically pass the screening. (Since you can’t find any statistically significant negative results, there will be no statistically significant negative results to report, thus the drug can never be proven to have failed the test. And since, at Phase I, “not failing” is a good-enough result to justify further research, the lack of a robust experimental design can, paradoxically, be a very useful feature.) With a lax IRB focusing only on the mechanics of the informed consent procedure, and not the possible pathways for harm or the mathematical intricacies of the results testing, one can easily get permission to conduct a “drug test” that no drug can possibly fail.
Doing so, of course, requires that you suspend judgment as to the empirical/clinical course demonstrated by the subjects. With no mathematical test for success/failure, an ethical researcher must rely on careful clinical monitoring to detect problems with individual patients or the trial as a whole. Starting with healthy subjects makes such problems obvious, since they aren’t supposed to die at all, but conducting the trial on subjects already sick (or, in fact, pulled directly out of the ER into heart surgery) creates a ready explanation why some of them may die, if in fact they do. So, again, there is an incentive to conduct the trial in what would otherwise be a scientifically invalid manner, essentially building in negative outcomes from the beginning (if the patients already have life-threatening illnesses, you’re going to get some bad outcomes no matter what) as a screen for the negative outcomes that may arise from the experimental procedure. This makes it difficult to honestly answer the question whether the procedure harmed the subjects, but makes it easy to argue that it did not provably harm them.
Thus, for an unscrupulous researcher (and again, this part of the discussion is hypothetical; it is not aimed at a particular individual), it may be possible to design a trial that cannot deliver honest and reliable results, but which also cannot fail to provide the preferred result from the point of view of a drug manufacturer or funding source. Doing so requires conducting a trial that is both scientifically non-decisive by intention and which lacks the ability to identify clear harms to subjects. It may also require deliberately enticing patients into the trial for whom better and safer therapies are available, precisely to use their pathologies as a ready excuse for adverse clinical outcomes which the trial may produce in them. And, it necessarily requires vacating the professional obligation to use vigilance and judgment to monitor and protect patients in all circumstances, and especially the experimental environment – and to instead rationalize patients’ outcomes away in order to avoid public knowledge, and possibly self-knowledge, of the harms inflicted upon them.
Convenient rationalizations are not an acceptable mindset for those who take vulnerable others into their care. The fact that a trial design cannot determine whether its subjects have been harmed is not an acceptable exculpation of those whose obligation was to watch for, detect, and ameliorate such harms. It is a reason why such trials must not be conducted in the first place.
Just once, I wish we could have a debate over an important political issue that wasn’t entirely shaped and determined by sheer stupidity and ignorance from the right wing. Today will not be that day.
The winger blogs are all a-twitter over a story noting that the Omnibus Budget bill that was (finally) just passed contains a provision – known as the Dickey-Wicker Amendment, which the religious wingers have stuck in every budget since 1996 – prohibiting federal funding for research “in which human embryos are created, destroyed, discarded, or knowingly be subjected to risk of injury or death”. Setting some kind of a record for intellectual incompetence, the right-wing CNSNews mis-reported this as “Obama Signs Law Banning Federal Embryo Research Two Days After Signing Executive Order to OK It” – which, in one single sentence, misrepresents the event (he did not sign a law on embryo research, he signed the budget bill, which contained one small amemendment addressing embryonic research among its reported 3,500 pages of text and appendices), false as to fact (his executive order did not address embryo research), and completely wrong in its implication (the budget amendment does not undo the research policy Obama announced, as this headline implies). Despite this falsity and confusion, the event is viewed as some sort of humiliation for, or hypocrisy by, President Obama, since he had made a point of repealing the Bush ban on stem-cell research funding just two days before signing the budget with its unrelated embryo-research amendment. Much chortling and back-slapping is now underway, among people who know nothing about the issue and are apparently too dumb to read.
Yuval Levin was a staff manager of the Bush-era “President’s Council on Bioethics”, a body widely derided for its almost comically right-wing leanings and gross intellectual malfeasance. Today he steps in it trying to say something all clever and sophisticated about the new authorization for stem-cell research. I got as far as the second paragraph before the crankery blew me away:
“Choice” – the exercise of the fundamental value of autonomy as it affects the most distinctive, and most embattled, aspects of women’s lives – is always under siege by the right wing and its religious foot soldiers, as much so today as at almost any time. And today, “Blog For Choice Day, 2009″, the anniversary of the Roe v. Wade decision and nearly coincident with the the New Year and the Obama Inauguration as well, it is worth taking stock, and seeing just how encroached and relentless that battle has grown, and what hope of progress arises at this time of new beginnings.
The manifold horrors of the Bush years are finally behind us, and President Obama is already taking steps to end their ravages and wipe away the stains they have left upon the United States. In the area of reproductive autonomy, he has sent encouraging signals that he will repeal the odious “Gag Rule” and “Conscience Clauses” and oppose legislative attempts to further intrude upon women’s freedom. Hopefully the discriminatory Hyde Amendment will finally bite the dust as well. But that those are salient issues is only evidence of how much has been lost in a short time.
That we have to beat back absolute absurdities, such as that hospital personnel may refuse to treat patients in need out of personal prejudice alone, or that any yahoo with an ideological grudge, down to and including pharmacy clerks and cash register tellers, can withhold products and prescription medications on the same whim, means that the first promise of the unfolding Obama administration is simply to undo some of the trespasses of recent years, restoring what, under Clinton, nobody imagined could be lost. Actual progress will have to be a follow-on goal.
So it is not merely “choice” – reproductive autonomy in the area of birth control and abortion – that is under siege, but the entire range of choices women may make regarding their healthcare, sexual and reproductive lives, and liberty in general. Not only the right to abortion has been restricted, but, as part of their war on women’s sexual health, women’s rights to make factually informed choices about their own health and treatment options, to choose, purchase, and receive medicine and healthcare products prescribed or recommended for them, to choose how to balance their sexual and healthcare needs without interference, to choose their own goals and methods in family planning without prohibition on extremist religious grounds, to choose to use scientific medical advances without arbitrary religious restriction, and to make any number of other choices regarding their health and bodily autonomy, have systematically been assaulted, hamstrung, and denied by legions of religious-extremist obstructionists inside and outside the Bush administration. The first item on the “choice” agenda must now be restoring the basic set of choices that existed before the whackos got loose; only then can we begin to extend and refine the range and accessibility of those choices.
There is good reason to be hopeful, as, barely days into the Obama Presidency, a new sense of decency emanates from Washington and the most egregious crimes of the recent past are repudiated and undone. There is little reason to be ecstatic, however - and those who value women’s autonomy know too well that women are always the first to be thrown overboard for political expediency, and that women’s bodies and lives are of little weight in the traditional political balance. It would be foolhardy to expect President Obama to be too radical a departure from business as usual in that respect, though he has been generally good on choice, and on scientific, vs. religious, policymaking. Sadly, I expect that “Blog for Choice Day” will be an annual tradition that outlasts even this administration. But this is certainly the beginning of better things to come, and the victory has never been out of sight, however hatefully it has been contested. Good days ahead!
tgirsch of Lean Left (and my own blogfather!) writes:
I’m interested in the issues surrounding animal testing. I’m certainly not a member of the PETA crowd or anything, but at the same time, I’d certainly think we should keep such testing to a minimum, using it only where it’s necessary, useful, and relevant. But I honestly don’t know what all the issues are.
But that can take many forms, one of which is mocking, in appropriately childish fashion, PETA’s own tactic for pressuring corporate chicken-torturers [sic]. They have a Web sign-generator site in which they encourage people to post comments about Kentucky Fried Chicken’s practice of, as they put it “tortur[ing] chickens for profit”. Whatever the hell that’s about, it interests me far less than the fact that PETA, as a group, is offensive and abusive to real people, whom I care about far more than the animal fetish-objects that are their sole obsession. So if we’re going to make little signs about cruelty and inappropriate moral priorities, well, let’s get our inappropriate priorities straight, first:
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.
Making with the sorely overdue link-love: two months ago, Amanda Marcotte (of Pandagon, and the best thing that ever happened to John Edwards) linked my prior post on right-wing propaganda about Margaret Sanger (as a way of attacking Planned Parenthood). She points out the fact that, in Sanger’s day, PP was actually anti-abortion (largely for reasons of the relative safety of the procedure, much lower then than now), and that the wingers seem to have no conception of the irony of their slanders.
The article generated a fascinating discussion thread, however (with minimal, but nonzero, trollage) - one that I only stumbled across today by following a visitor link (thanks!). I’m sorry to be so late on this but I encourage everyone to run over there; the discussion is interesting and, collectively, it includes a fascinating list of resources on the history of abortion, abortion and race, and sexual autonomy as seen from a variety of times and places, and presented in a variety of media (the rock-opera version of a 19th-century German play about the link between lack of sex ed and unplanned pregnancy sounds . . . wild – and I had no idea there was a whole list of early silent movies on the same topic!). Now I’ve got a lot more reading to do! So do you.
[NB: I began this review just after the movie came out, almost 15 months ago, and never finished it. Finally, sitting around this weekend, sick and procrastinating, I decided to get it off the books. Here it is, for whoever's still interested.]
The 2005 techno-thriller The Island hides a ham-handed anti-biotech message amidst its helicopters, gun battles, and explosions of various kinds. It trots out some of the standard “clone army” cliches, but goes beyond this, in places literally taking its dialog directly from the religious-right’s anti-science talking points. It fills a certain niche in the long line of biotech-nightmare morality plays, but with a particularly preachy, and notably slanted, take.
DB, of the eponymous “Medical Rants”, makes a good point about rare diseases:
The problem with Lemierre’s Disease is that it represents a “long tail” disease. Most sore throats are viral or due to streptococcal disease. At least we thought that until recently. Evidence from 2005 in two articles suggests that the organism thought responsible for most Lemierre’s Disease – Fusobacterium necrophorum – may cause as much as 10% of pharyngitis. . . .
For the past 30 years, the infectious disease community has worked to decrease the use of unnecessary antibiotics. They have assumed that group A beta hemolytic streptococcal infection is the only pharyngitis cause which needs “necessary antibiotics”. They have assumed that group C and group G streptococci do not need antibiotics. They have excluded the possibility of unknown bacterial infections. Now it appears that Fusobacterium necrophorum may indeed be an “unknown bacterial cause” of pharyngitis.
What can we do about the Long Tail?
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.
I have no freaking idea what this means:
Researchers identified 72 female students who said they favored voluntary euthanasia. Researchers then gave orange juice to these subjects, but half of them got juice spiked with caffeine. The students then read a series of arguments against voluntary euthanasia. An after study showed that the subjects receiving the caffeinated juice remembered more of the arguments AND were more likely to shift towards anti-voluntary euthanasia views. Similar results obtained in a study of 76 males.
["Coffee for Persuasion, "The Chronicle of Higher Education, July 7, 2006, A17; thanks Timothy Murphy UIC]
More seriously, I guess it’s not surprising that short-term memory retention would be affected by neuroactive drugs – though it’s a bit worrisome that such an ubiquitous one would have such a notable effect. Taking a total wild-ass guess, I would assume that the change in position is a function of the greater retention of the material – that is, that ingesting caffeine doesn’t inherently make you anti-euthanasia, but rather that a differential retention of arguments specifically against that position, caused by the drug, would then tend to skew respondents’ answers in that direction simply because they then had more such arguments in their heads.
Looking further, the original report is here. The situation is more complicated than explained in the blurb above: The students were selected for having opinions favorable to voluntary euthanasia (so the researchers could test the affect of the reading on changing their opinions). They were not just told to read the articles about euthanasia, but were divided into groups and given one of two tasks: either a mechanical editing chore or a specific instruction to read the articles carefully and consciously try to remember the arguments they used; they were then tested on retention and the affect of the articles on influencing their opinions. They were then given counter-messages (articles in favor of voluntary euthanasia) and re-tested on the degree to which receiving the counter-messages undid the change in opinion they had undergone from reading the original arguments.
The results indicated that reading the first (anti-euthanasia) arguments had no effect on opinion or retention, with or without caffeine, for the students who were given the simple editing task without being told to concentrate carefully. However, reading the first argument with careful concentration did improve both retention of the arguments and a change in the students’ opinions; the effect was present in both the caffeinated and the no-caff groups, but it was greater with caffeine. Then, after reading the counter-arguments, students who did not take caffeine reverted their opinions back to their original opinions, but students who did take caffeine were not affected by the counter-messages and retained the new opinions they had adopted after reading the first arguments. (A summary of the report appears below.)
The researchers attribute this to the differential affect of initial arguments and counter-messages: apparently, there is a theory in psychology that when people are exposed to new information, they tend to favor the first message they hear, which sets up a defense in their minds against a counter-message that they hear afterwards. Interestingly, in the above experiment this effect was not observed for the non-caffeine group, but the caffeinated group did show a defensive effect against the counter-message. This seems to me just as important a result from this experiment as the basic effect of the caffeine itself.
The results seem to suggest that caffeine not only aids retention of information (that one is consciously processing already), but somehow fixes it more firmly in the mind or increases one’s susceptibility to being swayed by it. The first part doesn’t seem so startling, but the latter is, to my inexpert perspective at least. It would be interesting to repeat the experiment with, say, bioethicists or others well-versed in the issue, to say whether their opinions would be more vulnerable under caffeine than those of students presumably reading about the issue seriously for the first time. I would predict the professors would not change their existing opinions even with the caffeine boost; if they did, that would suggest that the caffeine not only increases receptivity to new messages but somehow overrides existing strongly held opinions (a result that, frankly, I hope is not the case).
From Frank Rich’s column yesterday:
That the administration’s stem-cell policy is a political fiasco for its proponents is evident from a single fact: Bill Frist, the most craven politician in Washington, ditched the president. In past pandering to his party’s far-right fringe, Mr. Frist, who calls himself a doctor, misdiagnosed the comatose Terri Schiavo’s condition after watching her on videotape and, in an interview with ABC’s George Stephanopoulos, refused to dispute an abstinence program’s canard that tears and sweat could transmit AIDS. If Senator Frist is belatedly standing up for stem-cell research, you can bet he’s read some eye-popping polls. His ignorance about H.I.V. notwithstanding, he also knows that the facts about stem cells are not on Mr. Bush’s side.
Hat tip: Guerrillawomen.
Everybody loves Art Caplan, but it’s hard not to get the impression that he’s just phoning it in much of the time. A WaPo reporter breaks down in panicky confusion over what to buy at the grocery store:
I can’t decide what to eat. I don’t mean which recipe to make, or what restaurant to go to. I mean when I go grocery shopping, I’m paralyzed with indecision. Everything, it seems, is either ethically, nutritionally or environmentally incorrect. Guilt is ruining my appetite. . . .
Should I buy the omega-3 eggs that are supposedly good for my heart? But wait, they’re not organic. Maybe I should spring for the $3.50 organic eggs from Horizon, even though I read that the company has gotten so huge, it’s driving out the smaller organic farmers. Perhaps I should get the cage-free eggs from a small farm in Pennsylvania? Or the brown eggs from vegetarian-fed, free-roaming hens? . . .
[C]hoosing what to eat and drink has become hard work. It’s not simply a case of taste or price. Now we have to ask ourselves: Is this good for my health? Have animals suffered? Is it local? Organic? Bad for the planet? Harvested by child workers?
What’s worse, the answers are often contradictory. Should I buy the locally grown lettuce at the farmers market, even if the farmer uses some pesticides? It’s good to support local farmers, but what about pesticides’ link to cancer?
Either she’s never encountered a complicated moral problem before, or she’s just surprised to find that food choices could be one of them. Either way, she’s arriving pretty late to this game. And Caplan, to his credit, points this out:
I asked [Caplan] if he found moral predicaments at the grocery store.
“Oh, absolutely. And it doesn’t even end with the food,” he says. “One of my great moral quandaries comes when the cashier asks, ‘Paper or plastic?’ ” (For the record, he chooses paper.)
Then he goes off the rails.
There’s apparently a bit of a dust-up brewing among vegetarians over the possibility of “cultured meat” – the lab-grown muscle tissue slabs that generations of sci-fi writers have assured us we’ll all be chomping in the near, sterile and tasteless, future. Such products are now nearing marketability, but the super-veggies and the mere-veggies can’t agree on whether they’re a green and ethical end-run around farmed animal flesh, or an unholy combination of Matrix-style technoslavery and the horror that is ham sandwiches (I’m not making this up).
What’s interesting to me about the debate is that it mirrors so precisely – down to the same buzzwords and some of the same quotes - the liberal/conservative debate over biotechnology and human enhancement. Intriguingly, in this case some of the more radical vegetarians are taking the position of the most conservative bioethicists. But there is also a pro-technology position that takes very much the same attitude toward engineered meat products that most bioethicists do to stem cell research or body enhancement, and brings in people from across the contentious spectrum of animal-rights advocates.
I find that heartening. It also provides a fascinating look at the ways certain divisions between attitudes and values can play out across relatively small, as well as grand-scale, issues of biotechnological impact.
Apparently feeling jealous that conservative Christians had gotten all the press for complicating assisted fertility technologies with their self-created moral quandaries, Orthodox Jews have now found some idiosyncratic anguish to call their own.
As the New York Times reports, some Jews are concerned that assisted reproduction involving donor eggs (either IVF, surrogate pregnancy, or intra-fallopian gamete transfer) would conflict with the “who is a Jew?” ruling that Jewish identity is transfered through the maternal line.
If the gestational mother is Jewish but the eggs are from a non-Jewish donor, is the kid a Jew or not? Likewise, if a Jewish woman donates eggs to a non-Jewish gestational mother, is that kid Jewish? (The latter is rare, because Jewish women tend not to be egg donors – thus increasing the likelihood of the former problem, where a Jewish woman seeks eggs but can only find a non-Jewish donor.) And, further, if a Jewish couple provides a fertilized egg for a surrogate pregnancy, because the Jewish woman cannot undergo gestation, and the surrogage mother is not Jewish, is that kid – born from an egg from a Jewish woman and raised in that woman’s Jewish household, but gestated by a non-Jew, one of the chosen people, or a wolf in sheep’s clothing?
The LA Times reports that 20% of licensed heart, lung, or liver transplant centers in the US do not meet federal guidelines, and that they show higher-than-average death rates. This is a very serious matter, but I think there is reason to suspect that the paper is misinterpreting or over-reacting to the data.
The Global Bioethics Blog has two interesting posts recently, touching on the relations between first-world and third-world healthcare systems and patients. They raise some interesting questions about the obligations the medical haves bear towards the have-nots, and the extent to which the pursuit of our own interests in a globalized medical marketplace dooms others in far reaches of the world.
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.
Jill Stanek has masterfully body-slammed the pro-choice community with a logical maneuver so powerful it would be irresistible if it happened to make any sense or involve actual facts, which, sadly, it does not. As usual, she is wrong in virtually everything she says, but is enjoying a wave of anti-choice congratulations over her latest clever obfuscation.
It is a tedious necessity, but I suppose we ought to take a closer look at what she’s saying, and what is actually true about what she’s saying (which are two very different things).
Art Caplan has written several times on the need for regulations banning drug use and other performance enhancements by athletes. I have criticized some of his positions before. Recently, though, he came out against regulations banning another form of enhancement, regarding them as too intrusive, or perhaps arbitrary.
I don’t think he can make these positions consistent.
The AP is carrying a story on the increasing popularity of hormonal birth-control regimens that provide round-the-cycle protection and do away with monthly menstruation. Women love them, and nobody understands why The Pill hasn’t always been this way.
In particular, the AP article makes no mention whatsoever, and the author is apparently completely unaware of, the reason a monthly period is built into birth control pills. The answer has nothing to do with women’s health or with increased contraceptive effectiveness. The answer, as with so many forms of interference in women’s sexual health, is the Catholic church.
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