Bioethics, healthcare policy, and related issues.
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.
I really loathe PETA, for lots of good reasons.
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.
[emphasis added]
Yep.
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.
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?
[This is the first post in an irregular series of reviews and discussions of fiction and non-fiction books relating to bioethics or concepts in the field.]
Robert J. Sawyer is a hugely creative sci-fi author (Hugo, Nebula multi-nominee and winner, slews of other awards) with a fascination for issues touching on human personhood and human nature. He has a widely-read series that posits a parallel universe in which H. neanderthalensis evolved to become the dominant species, with a distinctly different human nature from that of H. sapiens, and a number of similar books in which human nature and the science/religion conflict are examined from a perspective slightly removed - by the license granted to science fiction - from our own. His most recent book is Mindscan, an examination of the possibility of cognition “uploads” - the copying of memory and thought from the human mind into a permanently-rebuildable (hence immortal) synthetic substrate. The fact that the copying process does not destroy the original - that it creates two cognitively-identical minds housed one in its original organic body and the other in an indefinitely long-lived synthetic one, which then vie for recognition as the “real” person - gives the plot its tension.
APeticola has an interesting post at the always-challenging Health Care Renewal, on the tendency for diagnostic “thresholds” to decline over time - that is, the fact that certain conditions will tend to be seen, and treated, in more and more patients as those conditions acquire greater salience in the medical community.
In the news recently was someone or other’s recommendation that less severe degrees of obesity than morbid obesity be also treated by gastric bypass. This should surprise no one. There are constantly “discoveries” that it is better to be more and more aggressive with blood pressure, cholesterol, blood sugar targets; etc.; and thresholds for treatment are generally lowered with each new series of recommendations.
Diagnostic and treatment thresholds ratchet ever downward. It’s definitely good business. But is it good medicine?
Good question, certainly. And Peticola does a good job laying out some of the problems that this phenomenon may generate:
As treatment thresholds move downward, medical expenses move upward. And something else occurs: as thresholds are lowered for treating various risk factors, the benefit/risk ratio changes markedly.
But I wonder if there’s a point being missed here.
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.
