Bioethics, healthcare policy, and related issues.
Normally, I’m up for a good Devil’s-advocate following-your-principles-off-the-cliff screed as much as anyone. But it’s hard to figure out what triggered John Sutter of CNN to become so overwrought on the subject of eating dogs as food that he devoted an editorial to it and managed to wind up on both sides of the issue. Yes, as he notes, it’s traditional practice, and apparently big business, in some Asian countries, but it’s not much of an issue in the English-speaking world and he seems to be uniquely exercised about it. He both condemns the practice as barbaric and also suggests it is as justifiable as eating other animals (which he does not explicitly condemn), then concludes weakly that “it’s the [question] all of us should further examine”. Thus, it remains puzzling exactly how he feels or what he wants us to do about it.
An interesting, and healthy, discussion has sprung up just recently over the historical view of Richard Feynman, iconic 20th-Century physicist and “character” whose physics were impeccable but whose character was questionable, at the very least.
It is accepted that Feynman was one of the seminal figures of mid-century quantum physics. His influence extends even further due to the impact of his revolutionary physics textbook (Lectures in Physics), and to a large degree his outsize personal reputation, stemming from his iconoclastic personality, his interesting experiences (including roles on the Manhattan Project and the Challenger Space Shuttle disaster investigation), and the scores of “Feynman Stories” about his quirks and escapades, most of them devised and promoted by Feynman himself, orally and in his amusing books of memoirs. He cultivated idiosyncratic habits – such as playing bongos in the desert during the Manhattan Project, and grading college physics tests while sitting in a booth at a local strip club – which added to his reputation as a free spirit. He was also a renowned science educator, admired for his ability to convey complex ideas both to science students and the general public. There is an unmistakable “cult of Feynman”; professional physicists trace their own pedigrees to their contact with him as colleagues, students, or just casual acquaintances, and he commands stature in the public eye approaching that of rare science celebrities such as Einstein or Stephen Hawking. (A high-school friend of mine was an undergraduate at CalTech, where he took Feynman’s “Physics X” informal discussion seminar; he came back after his first semester swearing that Feynman should be President.)
It is also clear that Feynman was manipulative and abusive in his personal relations, most notably with women, and that he embraced behavior of that kind as part of his personal ethos. His own memoirs describe in detail his systematic approach to manipulating women into having sex with him, by adopting PUA-style techniques of verbal abuse he acquired from a “master” who taught him that the secret to getting sex was to “disrespect” women. Divorce papers filed by his second wife report angry verbal abuse and episodes of violence. Biographers have recorded his multiple affairs with the wives of colleagues and students, and his occasionally pretending to be an undergraduate in order to get young students to sleep with him. During his lifetime, Feynman was subject to complaints of his sexist treatment of women, including in language used in example problems in his physics lectures and textbook, which made women out to look bad as part of the problem; he was dismissive of these complaints. (He recounts one episode of protests at a public lecture, to which he responded by announcing “I would like to talk about something that will be especially interesting to the women in the audience: I would like to talk about the structure of the proton”. He seemed to think this was very clever, but gives no sense that he even understood why there was a protest.)
Feynman’s biographers, and more recent defenders, have generally regarded this behavior as a minor, negligible facet of his complicated personality – possibly a product of the death of his first wife at a very young age, and at least as being typical of behavior and attitudes of Feynman’s generation, and thus less interesting than his unique quirks and scientific achievements. His stature as an historical figure is high, due to his undoubted scientific pre-eminence and the cult of personality he created for himself; his sexism somehow rarely figures into that evaluation. The general opinion seems to be that he was a great man because he was a great scientist and an interesting or remarkable man, while the sexism and abusiveness somehow stands apart as a peripheral issue. (To be fair, even his detractors admit that Feynman seemed to accept women as scientific colleagues, and in some cases – notably that of his own sister, the astrophysicist Joan Feynman – to promote their careers. But even his defenders admit that he could treat those same women in sexist ways at the personal level.*)
In the last couple of weeks, there has been a spate of blog posts commenting on Feynman’s character and offering a reassessment (downward) of his stature by way of foregrounding his sexism and abusiveness, treating them as central elements in understanding him as a whole person. Maggie Koerth-Baker seems to have kicked it off at Boing-Boing, with incisive comments on why Feynman’s attitudes toward women were so problematic. Matthew Francis, of Galileo’s Pendulum, picks it up, detailing Feynman’s bad behavior at greater length and offering an important summary conclusion:
People can become greater than they are by contributing great things to the world, but it’s important to remember that the human being behind those accomplishments isn’t a god in human form. Don’t worship — understand. Don’t erase the bad acts — remember them in hopes of overcoming them in the future. Only by understanding our scientific giants as full human beings can we do them justice, and hopefully create a more just scientific culture in the future.
Mathematigal speaks eloquently about how the acceptance of sexist behavior by prominent scientists, and the glorification of those scientists for their technical work alone, as if the harm they did to others just wasn’t a factor, creates a continually oppressive and demeaning context for women in science in general, in addition to the particular victims of those men.
It’s important to have these voices challenging the Feynman cult, and the phenomenon of prominent-male-abuser cults in general. These perspectives are a useful corrective to the perception of Feynman, and a warning regarding our understanding of others. But this conversation has also generated reflections on how we are to understand important historical figures, particularly ones renowned for highly particularized achievements in narrow fields, in light of their overall lives and personalities. Janet Stemwedel offers an interesting perspective:
There is a tendency sometimes to treat human beings as if they were resultant vectors arrived at by adding lots and lots of particular vectors together, an urge to try to work out whether someone’s overall contribution to their field (or to the world) was a net positive. . . .
One take-home message of all this is that making positive contributions to science doesn’t magically cancel out harmful things you may do — including things that may have the effect of harming other scientists or the cooperative knowledge-building effort in which they’re engaged. If you’re a living scientist, this means you should endeavor not to do harm, regardless of what kinds of positive contributions you’ve amassed so far.
Another take-home message here is that it is dangerous to rest your scientific outreach efforts on scientific heroes. . . .
You may be intending to convey the message that this was an interesting guy who made some important contributions to science, but the message that people may take away is that great scientific achievement totally outweighs sexism, racism, and other petty problems.
But people aren’t actually resultant vectors. If you’re a target of the racism, sexism, and other petty problems, you may not feel like they should be overlooked or forgiven on the strength of the scientific achievement.
The notion of “resultant vector” (a concept from physics that expresses the final, net result of multiple different forces acting from different directions) is evocative. It captures the idea that somebody should be considered a good person “overall” if the good parts of their work, or behavior, are more significant or somehow greater in magnitude than the bad things they did – thus the net additive result is positive rather than negative. For Stemwedel, this basic method of evaluation is flawed (“making positive contributions to science doesn’t magically cancel out harmful things you may do”; “people aren’t actually resultant vectors”). And she is right in this – there are other ways of evaluating people than simple addition of simplistic quantified evaluations of good and bad acts. Sometimes, we judge people solely by their worst act, without even considering the good ones – criminals are punished, sometimes executed, for single acts that may be aberrational in the context of a long life of good works. Sometimes we even judge people negatively for acts that are net positive “resultant vectors,” for instance illegal mercy killings. And all this leaving aside the obvious huge problem in deciding how to quantify good and bad “vectors”. (The “resultant vector” technique essentially just rationalizes a pre-determined conclusion. You have to decide beforehand what acts are good or bad, and to what degree, before you can measure and add the “vectors” in a person’s life. By this technique, Feynman is a net positive vector – pointed in the direction of science – only because his admirers have already decided being a sexist abuser isn’t as important as being a Nobel Prize winner.)
But these observations don’t tell us how we actually should go about evaluating a life. Stemwedel is right that good works don’t “cancel out” bad ones, but she doesn’t say exactly how they should both be weighed together (other than not as “resultant vectors”). And her emphasis is not on moral evaluation as such, but the practical questions of how best to do science effectively, and promote it to the public. Other than agreeing that the “resultant vector” schema doesn’t work, we still don’t have a way of arriving at a final conclusion about how to understand people and their roles as prominent figures. In the case of Feynman, the commentators above mostly default to “as a” analysis: “as a” physicist, Feynman was outstanding, but “as a” human being in relation to fellow human beings, he was flawed; it is up to each person to decide which matters most to them.
What both the “as a” analysis and the “resultant vector” calculation have in common is the expectation that there will be some determining value that gives us a singular and final answer regarding a person’s worth or stature as a human being. In vector analysis, all impinging factors contribute to a final value that has components along different dimensions, but a single outcome. In “as a” analysis, we similarly evaluate the various contributing facets and then declare one of them to be more important than the others.
I think instead that we should give up the attractive but unlikely expectation that people can be evaluated in an overall sense. This is essentially Stemwedel’s point in rejecting “vector” analysis, but it is true for any other similarly unitary analytical algorithm. Saying that a criminal’s one bad act must be punished in spite of all their good ones does not mean that their life story consists only of that one act, or their humanity consists only of its badness. Saying that someone is a good scientist but a bad person, or, more subtly, a good scientist and a good person with some bad traits, does not mean we have to arrive at a final conclusion as to whether we approve of them overall, or whether they are “really” a “hero”.
We can extend the idea of the “as a” analysis to accept that people can exhibit different degrees of excellence in different areas of their lives. They can be good “as a” scientist and bad “as a” man in relation to women, without implying that they are anything in particular overall. I think we have to come to terms with the fact that most people are admirable, or not, to one degree or another in different areas of their lives. The problem is not that it doesn’t make sense to say that people are good or bad in different ways – the problem is that we often insist on understanding them in just one way, that we insist on naming people heroes or bums and thus force ourselves to squeeze them into those totalizing categories.
This not only violates common sense in the obvious way, but it ignores the interplay between the different aspects of people’s lives. It’s not coincidental that people are good in one way and bad in another; both aspects of their lives inform and interpenetrate one another, and evaluating one aspect in isolation both ignores its connection to other aspects and implicitly carries that evaluation over to all those other aspects. This is explicit in a controversial blog post by :
While not an excuse, several of [Feyman’s] 1950s adventures were probably related to the deep pain and insecurity caused by the death of his first wife Arlene; by almost any account the two shared a very deep and special bond. It was also during the late 40s and early 50s that Feynman was doing some of his most intense work on quantum electrodynamics, and at least a few of the situations he narrates were part of him letting off steam.
Here, he states in so many words that Feynman’s personal challenges in one area (his wife’s death) excuse his bad behavior in a related area (his mistreatment of other women), and also that that bad behavior in some way made his scientific productivity possible. A better analysis would be that these different experiences and character traits are related – not offsetting and not independent, but simultaneously detectible within one another – and that this requires an understanding of the person, overall and in each of his different roles that is at least as nuanced and complicated as the personality it focuses on.
Feynman liked to imply that his quirky traits – bongo drumming, lock-picking, and so forth – were part of the unique character that made his scientific breakthroughs possible. He liked to tell the story of the time he directed distinguished foreign scientists at a sold-out conference hotel to rooms at a small hotel on the other side of town – without telling them it was a brothel; he clearly regarded the worldliness and sexual adventurism that led him to rent a room in a whorehouse as part of the “out of the box thinking” that made him a great scientist. And it’s not impossible that that is true. His willingness to be an iconoclast in overturning standard ways of thinking in science was clearly related to his independence and trouble-making in filing his famous dissenting Appendix to the Challenger committee report, which in turn was likely related to his willingness to flout convention by eschewing being a “gentleman” in order to badger women into having sex with him. But if it’s true that a lack of inhibition or other character traits are caught up in both his admirable scientific work and his less-admirable personal behavior, then it’s not true that we can separate out the two in evaluating him as a person. Rather than saying that he was a great scientist who just happened to be abusive toward women, we have to say that he was a person who was contemptuous of accepted standards of respect and deference – both in his treatment of women in bars and toward the reputation and works of fellow scientists. (Feynman also told the story of how he became a confidant of Hans Bethe at Los Alamos because he was the only one there brash enough to challenge Bethe in scientific discussions. This sounds like it reflects very well on both men’s characters: Feynman able to earn the respect of the more distinguished scientist through his intellectual power, and Bethe willing to submit himself to scrutiny from someone younger and less accomplished. But it is possible to see in his willingness to tell the great Bethe “You’re crazy!” the same willingness to “disrespect” women.)
We wind up with an extended view of one person across multiple roles and environments, in which their unique traits turn up for good or for bad in different ways. In Feynman’s case, his playfulness created openness to new experiences that likely informed his scientific thinking, but it also led him to indulge himself by creating pointless security breaches at Los Alamos just for fun, and to revel in playing mean-spirited practical jokes on the servers at a coffee shop. His contempt for social convention gave him a low tolerance for pretentious bullshit, but also led him to act contemptuously toward people he felt weren’t smart enough (on one occasion continually interrupting a visiting lecturer at CalTech to the point that he described Feynman as “the ‘village idiot'”). His extraordinary focus and mental stamina contributed to his scientific productivity, but also triggered violent outbursts at his wife for demanding personal attention when he was absorbed in thinking about math. Lauding any of these behaviors or accomplishments inevitably evokes other episodes arising from the same same traits: saying he was a great scientist because he devoted himself solely to mental exercise requires us to say he was a bad husband for the same reason; saying he was bold and creative in challenging colleagues’ thinking to their faces requires acknowledging that he was disruptive and cruel in having affairs with their wives behind their backs. For Feynman in particular, whose reputation stems at least as much from being “a curious character” as it does from being a productive scientist, treating the science that was made possible by his unique mindset as wholly separate from the anti-social behavior that was also thereby enabled is not just narrow but false.
Rather than summing people up as impossible and falsely-precise “resultant vectors,” and rather than choosing narrow stances through which to view them “as a” particular type of person with their other facets left to the side, we have to acknowledge that every person is made up of competing and complementary impulses that arise in various combinations in different circumstances (and which also change over time). This makes the idea of moral or intellectual “heroes” problematic, because that evaluation is almost always based on a narrow view of just one part of their personality or their work. Instead of this “as a” reduction, we need to adopt a “plus a” agglomerative view of human complexity seen in multi-point perspective: an insightful scientific vision “plus a” cheekily iconoclastic non-conformism “plus a” playful sense of humor “plus a” mean-spirited insensitivity to others’ feelings “plus a” misogynistic and old-fashioned view of women “plus a” self-indulgent willingness to emotionally abuse women for sex “plus a” fair and egalitarian willingness to accept all competent people at face value “plus a” . . . . The better we hope to understand people, the more “plusses” we have to add to that understanding and the larger and more complicated, more multi-faceted, our picture of them has to be.
The advantage to this is that it allows us to see people as admirable and disappointing at the same time, as most people surely are, in different ways, without requiring us to artificially inflate one aspect of their lives, or ignore other aspects. And this gives us a chance to arrive at a fairer and more accurate assessment of almost everyone, including other historical figures who bedevil us with their contradictory personas: Galileo (Feynman-like in his genius and petty-minded self-aggrandizing); Thomas Jefferson (architect of freedom and slave owner); Herbert von Karajan (exponent of artistic majesty and ardent Nazi), and so on. It is no contradiction that their genius or heroism was combined with less-savory traits; we simply have to acknowledge that each of us, not least the greatest among us, is complex and flawed and must be understood as such to be understood at all.
* This story, by Danny Hillis, about hiring Feynman as a consultant at the Thinking Machines Corporation, has always seemed to me to perfectly encapsulate Feynman’s dichotomous treatment of women, and his admirers’ ability to casually acknowledge, and simultaneously overlook, it: “The charming side of Richard helped people forgive him for his uncharming characteristics. For example, in many ways Richard was a sexist. Whenever it came time for his daily bowl of soup he would look around for the nearest ‘girl’ and ask if she would fetch it to him. It did not matter if she was the cook, an engineer, or the president of the company. I once asked a female engineer who had just been a victim of this if it bothered her. ‘Yes, it really annoys me,’ she said. ‘On the other hand, he is the only one who ever explained quantum mechanics to me as if I could understand it.’ That was the essence of Richard’s charm.”
I’ve been hesitant to say anything about the Hugo Schwyzer situation. It’s so contentious, so continually-on-the-boil, and so tedious. It also brings up a lot of difficult issues regarding the place of allies in liberation movements, and white men particularly, that I feel I need to come to better terms with before commenting. But I find my reactions to it call into question my own understanding of myself as a male feminist, and what I expect or perceive of my place – such as it is – in that movement, and that creates an entirely different can of worms for me.
Here’s a really great snippet from “An Examined Life” (which see). Renowned philosopher Judith Butler takes a walk with Sunaura Taylor, talking about the reality of disability and the ways physical impairment is perceived, and disability realized, by society. (One thing that was revelatory for me: Taylor refers to the city of San Francisco as “the most accessible place in the world”. I grew up near San Francisco and, while it’s an incredibly wonderful place, I’ve always regarded it as challenging; the hills and traffic, and narrow sidewalks, would have made me guess it would be one of the most difficult places to use a wheelchair. But Taylor notes that it has extensive curb cuts, good wheelchair-accessible public transportation, and a community that recognizes disability and welcomes people with impairments. This is telling testimony to the overriding importance of social context, rather than actual physical environment, to the reality of disability.)
This video is great in so many ways: Taylor’s discussion of the ways society makes her life with an impairment harder or easier; her description of the psychological burden in going into a coffee shop and ordering coffee, and then having to deal with the difficulties of either trying to carry it herself or asking for help – “it’s a political protest for me to go in”; the simple and lovely depiction of two affectionate people being out together, while not pretending the issue of disability doesn’t affect them; the segment in which they go into a used-clothing store (which charges by the pound! – I love San Francisco!) and buy Taylor a warm sweater, which is both a perfectly simple and normal act, and complicated by the ways impairment affects her ability to try it on and the process of payment – ending with the store clerk’s matter-of-factly accommodating reaction. Taylor works in a useful bit of disability-theory: the distinction between “impairment” (physical limitations) and “disability” (difficulties in living caused by social context or discrimination), and the video underscores that point again and again as Taylor goes about her day and talks about how disability affects her. (I’m not sure I’d go so far as to say that she has “what the medical world has labeled as arthrogryphosis”. I’m very much sympathetic to the notion of individualized definitions of disease and health, but I don’t think that means there’s no such thing as a diagnosible condition. I see no reason to say that she doesn’t really have arthrogryphosis if she meets the diagnostic criteria for it – as, by her own description, she seems to do. Pointedly repudiating her own use of that name, as she does in the video, doesn’t seem to me to gain anything; whether she wants to call it a “disease” is another matter.) There are also brilliant moments of reflection on the nature of embodiment and what it means to live an embodied life in a social context.
Just a beautiful, sweet film with surprisingly profound content, visually and verbally. I can’t wait to see the rest of this series.
Taylor: When do you still count as a human?
Butler: My sense is that what’s at stake here is really rethinking the human as a site of interdependency.
. . .
Butler: [When] you ask for the coffee, or indeed even ask for some assistance with the coffee, you’re basically posing the question “Do we or do we not help each other with basic needs?”
Jill Filipovic, at Feministe, has a great post up on objectification of women within liberal activist circles. It was prompted by the much-commented assholery of one Steven Greenstreet, who took video footage of female demonstrators at OWS protests and put it up on Tumblr, out of context and with no purpose other than inviting leering at the “Hot Chicks of Occupy Wall Street”.
Jill righteously calls him out for it (as did many others):
The deflecting from legitimate concerns, and the fact that the OWS “public” includes a lot of men who think it’s ok to treat women at a protest like we’re there for their visual fulfillment, troubles me. No one is saying, “Don’t find women attractive.” . . . No one is objecting to the fact that straight men are attracted to some women (fun fact: straight women are also attracted to some men! So really, no one is pissed about attraction, I promise). What people are pissed about is what Rebecca Traister says:
“The larger, simpler argument, outside of consent or permission, is: This video is sexist. It’s an example of women participating in public life — political, professional, social — and having their participation reduced to sexual objectification. That’s what happened here, nothing more, nothing less.” . . .
Emphasis mine. . . . [C]reating a blog and a video dedicated to showing women at a protest with the sole purpose of reminding dudes that women at the protest are hot? That does reduce women to objects of male attention. It’s another reminder, for women, that how seriously we’re taken and how valuable we are depends on how sexually attractive we’re deemed.
Read the whole thing; she’s got good things to say. But the part that really triggered something for me was this:
Frankly, the kinds of dudes who would come to the OWS protests because they heard there are hot chicks there? Are not the kinds of dudes I want to be protesting with. I would hope they’re not the kinds of dudes that most progressives would want to be protesting with — but judging by the lefty-dude reaction to Steven Greenstreet (hi Matt Zoller Seitz, looking at you!), that’s not the case. It’s disappointing.
To say the least. And far too common, from way back. It’s no secret that supposedly “progressive” groups have always been rife with sexism and sexual pressuring, and it doesn’t seem to be getting better. Progressives have never been immune to human failings, including stereotyping and bigotry of the kind that they supposedly abhor but sometimes don’t recognize in themselves; the long fight for acceptance in progressive movements of gays and transexuals is one case in point, and the difficulty many white (and especially male heterosexual) liberals have in recognizing and acknowledging their own privilege is another. But the LGBTQ community, people of color, and other marginalized groups, though still embattled, have by now to a considerable degree been granted by progressives the one thing many persist in denying to women: recognition of the fact that they have real interests, problems, and worth that must be taken seriously. The situation is far from perfect, and not everybody agrees on how the tensions between different progressive constituencies should be resolved, but in most cases they are acknowledged, and the human pain and human interests that lie at their heart are given due deference. Except in the case of women.
To be sure, progressives are not right-wingers. They don’t overtly hate women. They don’t gleefully consign them to death by deliberate neglect at the hands of sniffy sex-negative religious bigots. They don’t dishonestly and cynically strain moral concepts – often ones introduced and championed by progressives – such as “informed consent” to create barriers to the very autonomy they are intended to protect. They don’t penalize the fact of women’s having sexual natures – just the opposite! But in too many cases they don’t grant them the respect and freedom needed to act on their own natures and seek their own good. Just as with conservatives, women exist for far too many progressive men for the purpose of their gratification – an impersonal usage that erases those women as persons themselves.
Which leads me, finally, to the question that came up for me on surveying this latest stupid and distasteful incident: how, exactly, are these dipshit “progressive” men progressives? What goes through their heads, what process takes place in their heads, such that they wind up thinking things like “let’s go to the OWS protest and photograph women’s breasts!”? How, when they are called out for that, do they expend so much energy defending their childishness and sexism? Why do they not care about offending or humiliating their supposed fellow activists – about derailing or undermining the movement they claim to support – about embarrassing that movement by acting in a regressive manner and then elevating their own bad behavior into the limelight? More particularly, what is it that allows progressives to empathize with everyone but women, even women in their own movement? What allows them to hear everyone else’s protests at mistreatment, and dismiss those of women out of hand?
In a way, I suppose it has something in common with the denial and self-absorption that allowed Southern slave-holders to rationalize their own crimes. Patriarchy is its own form of slavery, more complex and less overt, but very real, and it is very hard to acknowledge you are doing wrong when your entire lifestyle, all its comforts and conveniences and pleasures, derives so much from others’ service to your needs. It is easy to protest obvious wrongs that don’t require you to change your own life to amend. But progressive men, in many cases, are no better than the privileged classes of the Confederacy, of apartheid South Africa, of Wall Street itself, at admitting that their own satisfaction depends on bending others to their desires, against their will and at the denial of their basic human personhood.
You can’t be progressive just for causes you aren’t invested in, at the expense of people you don’t like. Being progressive means wanting to live in a better world – not just wanting to take down the most guilty in this one and then carry on regardless. Being progressive means checking your privilege, living the dream you envision, being part of the solution – all slogans that have at their heart the basic truth that you have to be as critical of yourself as you are of others, or more so, since you can only really change yourself.
You aren’t a progressive if you mistreat women. You aren’t a progressive if you think progressivism is defined as rallies, protests, and events, rather than a mindset that is grounded on a world in which people are treated with respect, by everyone, starting with yourself. You aren’t a progressive if you go to events but don’t treat the people there with regard. You aren’t a progressive if you revel in your own privileges at the expense of the pain and diminishment of others, then feel hurt because you’ve decided that whatever superficial support you feel for “the cause” entitles you to use others for your pleasure and then resent it when they object.
If you’re not a progressive for any of these reasons, you’re little better than a reactionary even if you vote the right way. You’re pro-choice? Great. You don’t think being pro-choice encompasses the choice to control, and present, your own sexuality on your own terms? You’re not a progressive, and you’re a pain and an embarrassment to those who sincerely try to be.
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.
Rick Santorum – humiliated in his last electoral bid, and trailing badly in the GOP primary polls – knows he needs to keep saying outrageous things to keep himself in the public eye. Plus which, he’s crazy, so saying outrageous things is never difficult for him.
He’s been in the news lately for making bizarre comparisons of gay marriage to beer, a cup of tea, and a paper napkin – all predicated upon the rather obvious but undeniable point that “it is what it is. Right? You can call it whatever you want, but it doesn’t change the character of what it is”. This is a claim on which Santorum congratulates himself by describing it as “sort of metaphysical”, but might otherwise be categorized as “sort of idiotic”. Apparently it means something to him, though, because he keeps saying it – most recently in a just-posted interview on the Iowa Independent Website: “It’s like going out and saying, ‘That tree is a car.’ Well, the tree’s not a car. A tree’s a tree. Marriage is marriage.” He goes on to spew a frothy mixture of crazy in a wide arc: gay marriage “minimizes what that bond means to society” (by letting people . . . form that bond . . .); “you’re gonna undermine religious liberty in this country” (his examples consist exclusively of the liberty to prevent other people from doing things); “we’ve created something that is not what it is” (so much for the tautological metaphysics).
But there’s a particular moment in the interview I want to highlight, because it captures so perfectly the ideological dishonesty, and complete divorce from reality, of the right-wing, and particularly the anti-choice movement.
If your position on abortion prevails and abortion is prohibited, Senator, what should the penalty be for a woman who obtains an abortion or a doctor who performs one?
Santorum: I don’t think there should be criminal penalties for a woman who obtains an abortion. I see women in this case as a victim. I see the person who is performing the abortion as doing the illegal act
So there’s a minor news bubble developing over the situation of Stanley Thornton, the “adult baby” recently profiled on a reality-TV show.Thornton lives an “adult baby” lifestyle – he dresses in baby-type clothes and a diaper, and has a nurse/baby relationship with a live-in friend who acts as a mother figure; she takes care of him and he is dependent on her, and they like it that way. There’s a surprisingly large community of such people, including the usual Internet chat rooms, Web sites, and so on. In addition, Thornton receives Social Security disability payments, due to a reported heart condition as well as taking multiple prescription medications. His caretaker is also on disability, for what reason I don’t know. They are not housebound, but neither is apparently employable; at any rate, neither has held a job in some time.
The problem is that they were incautious enough to go on a National Geographic TV special about “taboo” lifestyles. Senator Tom Coburn saw it and has now pressured the Social Security apparatus to investigate this particular person based on his appearance on the show. His ostensible grounds for complaint are that, from what he saw on the show, he believes Thornton appears to be capable of supporting himself:
Given that Mr. Thornton is able to determine what is appropriate attire and actions in public, drive himself to complete errands, design and custom-make baby furniture to support a 350-pound adult and run an Internet support group, it is possible that he has been improperly collecting disability benefits for a period of time.
The first thing to be said about this is that Coburn seems to have a very strange idea of what “disability” consists in, or what is or is not required to hold down a job. There is nothing about being SSI-eligible that implies you cannot “determine what is appropriate attire and actions in public”, or drive a car or take care of personal needs such as performing errands. And there is a vast gulf between being able to do all or any of that and being able to support yourself in a capitalist economy (to say nothing of one in a years-long recession with close to 10% unemployment). Coburn seems to harbor both a very condescending view of what disability is, and a typically hard-hearted view of what self-reliance requires: the disabled are essentially children, mentally non-competent, cannot even choose their own clothes, and certainly cannot act independently in public, drive, or run errands unsupervised; at the same time, anyone who’s not actually bedridden ought to earn their own living or die trying. Coburn’s worldview seems to be taken from a Dickens novel: spastic lunatics chained to the walls in Bedlam, and starving cripples begging in the streets. In addition, Coburn’s apparent belief that anyone who can cobble up a chair out of 2x4s (I’ve seen pictures of Thornton’s furniture; he’s not exactly Sam Maloof) should be working as a full-time woodcrafter is rather absurd, and the idea that maintaining a Web site imputes the ability to earn a living identifies someone who is clearly struggling to grasp the nature of the intertubes.
But for all its confusion, Coburn’s statement at least seems to focus on the right issue: it’s true that Thornton is not qualified for SSI disability payments unless he is actually disabled and partly or wholly unable to support himself, and it’s not unreasonable to ask whether that is true. Given that Thornton does offer his furniture plans for sale, and he and his friend apparently also offer a paid sleep-over service catering to other adult babies, he apparently does have some income and there may be a legitimate question about his qualifications for disability. As far as it goes, that’s not an unreasonable question to ask.
What gets me about this is that a senior US Senator took the time to pursue an inquiry against one single individual under a program that accounts for close to $13 Billion per year, or more than 20% of the entire national budget. Does he really think that is a productive use of his time? More to the point, was this really prompted by a suspicion that this one disabled guy might have some illicit sturdy-furniture income he hasn’t been reporting, and Coburn is determined to find out how much that is?
It seems obvious that Coburn focused on this case not because this SSDI recipient has made two or three pieces of exceedingly simple furniture (Coburn’s letter notes that one basic chair took him a year and a half just to design – hardly qualification for gainful employment), but because “his choice to live as an adult baby violates societal norms”, as Coburn himself puts it. In fact, although Coburn’s letter ostensibly focuses on Thornton’s possible ability to hold a job, it repeatedly mentions his lifestyle. More than that, Coburn’s official Senate Web page touts the same letter without a single reference to actual qualifications for disability; instead, it proudly notes that Coburn is “requesting an investigation of how people choosing certain lifestyles – focusing specifically on those who live their lives role-playing as ‘adult babies,’ are able to get taxpayer-funded Social Security Disability Insurance (SSDI)”. In short, Coburn is using his position as ranking Republican on the Senate Sub-Committee on Investigations to bring down the heat on “people choosing certain lifestyles” – for which the issue of possible income on the side is only a convenient pretext. And the crowing and mockery this has already generated on the usual right-wing Web sites can easily be imagined.
It’s hardly worth saying that this is ugly and mean-spirited, or that it makes little sense if taken at face value. Whether or not this person is disabled has nothing to do with how he chooses to dress or what kinds of emotional relationships he values. And the nonsense about driving, running errands, or designing furniture is pathetic as an excuse for a challenge to what is apparently a documented medical disability. Coburn has found someone whose lifestyle he disapproves, and is taking advantage of the fact that it’s unusual and off-putting to many people to harm that person while grandstanding on the issue to promote his anti-social, anti-government ideology.
It’s not like he wouldn’t have been glad to cut anybody else’s Social Security benefits (Coburn has consistently voted against virtually every aspect of Medicare, Medicaid, SCHIP, and other healthcare programs, against the SSI “lockbox”, and in favor of privatizing Social Security). But finding someone in the program he can despise, and then inviting (and getting, in spades, from the right wing) open mockery of that person’s lifestyle as a lever for attacking their health benefits, is a right-wing two-fer: hurting people who aren’t like them, while casting social welfare as unnecessary or a fraud. The message, in political or social terms, is clear enough. But the message for the disabled, and those with alternative lives, is also clear: if you’re disabled, don’t be weird, because it makes you a target; and if you’re weird, don’t expect help if you’re also disabled, because you don’t deserve it.
Interesting tactic in the New York City gun-control fight:
A gun-rights-advocacy group sued Mayor Michael R. Bloomberg on Tuesday, claiming that the city fee for obtaining a home-handgun permit was so excessive that it impinged on the Second Amendment.
The group, the Second Amendment Foundation, based in Bellevue, Wash., is focusing on New York’s fees because, according to the group, the city is one of the few places in the country that requires people to obtain permits to keep guns in their homes.
The city’s fee is $340, plus a $94.25 charge for a fingerprint check. The fee in most other places in the state is $10, according to the foundation. Mr. Bloomberg has long been a staunch supporter of gun control and has made efforts to reduce the traffic in guns into the city through sting operations, lawsuits against gun dealers and other antigun measures.
The city’s fee for obtaining a home gun permit has long been in place.
The suit, filed in federal court, claims that the city’s fee is so exorbitant that it “impermissibly burdens the Second Amendment right to keep and bear arms,” and the suit argues that because city residents are forced to pay more than others, the fee also violates the 14th Amendment’s equal-protection clause.
(Just to be clear: New York City, separate from New York State, requires a permit just to have a gun in one’s own home; the process of obtaining one is deliberately made as burdensome as possible, including high fees and an extensive application and testing process designed to make you fail, as a form of indirect gun control. A completely different and vastly more difficult process is required to obtain a concealed carry license, which is rare in NYC.)
What’s interesting to me about this is not the gun-control issue itself, but the legal approach in this suit: they are claiming that the fact that the state (or the city, acting under authority from the state) has erected restrictive procedures that make it significantly difficult to exercise a right that in fact exists under law should constitutionally invalidate those restrictive procedures. And presumably they’re going to argue that the rationalizations the state offers – that they must review applications for reasons of public safety, that this incurs administrative expenses that must be covered, that the city has the authority to act on its official perception of the public interest against the wishes of the people actually affected, etc. – are obviously disingenuous or at any rate insignificant in view of the basic right of people to exercise freedoms that otherwise exist under law.
This reflects is a seemingly simple principle – people have a right to exercise their rights – that actually has considerable legal repercussions. For the most part, the Supreme Court has not recognized that the government has a positive obligation to ensure that people can act on their legal negative rights (i.e., a right that merely specifies freedoms that other people may not ban), but has not usually gotten into the question whether regulatory procedures that constrain but do not entirely vacate a given legal right are for that reason illegal. It’s a difficult problem; obviously, some regulatory restrictions are necessary in many cases, and equally obviously, that regulatory authority can be used to create insuperable practical barriers in cases where the law does not allow outright bans. But, to my knowledge, the Supreme Court has not held that the mere existence of a barrier is the equivalent of an unconstitutional ban. In fact, the Court has often gone out of its way to give deference to government regulations even when their burden on citizens’ rights is grave: the standard test for Constitutionality of a law is that it must show a “rational basis” for its existence, which the Court interprets to mean literally any rationale – however stupid or obviously dishonest – that is not literally logically impossible; the Court also usually rejects “substantive due process” and “equity” arguments, which ask for the application of general principles of law or morality outside the strict “black letter law” of statutes and case precedents. Thus, laws and regulations are typically upheld as written, on the presumption that legislations have wide latitude to act as they choose, and the laws they write are therefore prima facie in keeping with the principles of representative democracy regardless of how burdensome, unfair, or duplicitous they may be.
There are few exceptions to the “rational basis” doctrine, all having to do with Constitutional-level civil rights. The Supreme Court has held that laws directly impinging “fundamental” Constitutional rights, or imposing ethnicity-based restrictions on freedoms guaranteed by the Constitution, must meet the test of “strict scrutiny” – that is, they must not merely have a nominal “rational basis”, but must “advance a compelling state interest”, be “narrowly tailored” to that interest alone, and use the “least restrictive means” to achieve it. Arbitrary distinctions between groups also come in for strict scrutiny, under the 14th Amendment’s “privileges and immunities”/”due process”/”equal protection” clauses. In other civil rights cases, the Court has imposed a doctrine of “intermediate” or “heightened” scrutiny, under which the laws must demonstrate a weaker but still compelling rationale for their restrictions. (Almost all sex- and gender-related discrimination receives only heightened scrutiny, because, you know . . . teh uterus . . . .) In the case of abortion, the Supreme Court has struck down some, but not all, anti-choice laws and regulations that were clearly intended to impose, in its words, an “undue burden” on women’s exercise of their rights; however, others were permitted under heightened scrutiny if the anti-choice state could articulate even a moderately plausible-sounding (as opposed to barely “rational”) reason for the law, even when those laws were obviously intended only as burdens on women, and even when they arose as part and parcel of laws that were otherwise rejected for that reason. So, in general, the Court has not taken the step of saying “this law is obviously intended to void a legal right, and you can’t do that”; it merely subjects burdensome laws to various levels of analysis as to how well they disguise that intention.
What’s interesting about this gun-control case is that the legal theory it relies on (as reported in this short article – hard to tell if this is true) attempts to raise burdensome but otherwise normal administrative regulations to the level of Constitutional infringement – that is, it appears to claim that having to pay ordinary but high fees, and jump through ordinary but complicated procedural hoops, is as much an infringement on Constitutional rights as are poll taxes or racial segregation, or at least as gender-based restrictions on employment. “Unduly burdensome” regulations may be unconstitutional, it’s true, but in this case the regulations are not unusual, even if the fees are high: every jurisdiction (other than a couple of whacko states that have no gun permit laws at all) processes paperwork, assesses fees, and in general requires some kind of procedural rigmarole for getting a gun permit. New York City is an outlier, in that their licensing process is unusually difficult (they make you take a test that includes trick questions), lengthy (it commonly takes months), and expensive (as much as 40 times what other jurisdictions – even in New York State itself – charge). But that is only a matter of degree, which it seems can easily be explained given the City’s political determination that they want to make the process stringent. (The fees, I suspect, are an estimate of the fully-loaded cost of staff time and expenses to process the fingerprints, application, and background check, and are probably slightly, but not hugely, inflated. That’s a bullshit way to calculate fees for a job the government actually exists to perform in the first place, but that’s a different matter.) So the issue here is whether a normal and appropriate government function – processing applications and assessing fees – which nobody suggests is unconstitutional in its typical form, becomes unconstitutional when that function gets so out of hand that it essentially becomes a tool for prohibition of what is otherwise a legal right.
This has obvious implications for the constant barrage of dishonest and hostile regulatory encroachments on fundamental Constitutional rights that have become the favorite tactic of the anti-choice brigades. Unnecessary waiting times, intrusive and unnecessary medical procedures, explicit ideological harassment deliberately intended to discourage people from the decisions they have made, technical regulations intended only to delicense or bankrupt clinics – all these and much more have been commonplace tactics in the anti-woman crusade for years, and they are getting more brazen and more offensive almost literally day by day.
These attacks on abortion rights go much further than New York City’s procedural hurdles for a gun permit. In New York, if you pass the test and pay the fee, they will give you a license (for home possession, at least). The administrative procedures are clearly intended as a bottleneck, and the fee is unfair, but the procedure is straightforward and involves nothing that is not common in the administration of similar governmental functions across the country. Anti-choice regulations, in contrast, commonly apply only to abortion procedures, impose burdens that serve no reasonable purpose or are inflated absurdly beyond what is necessary for their ostensible purpose, or distort ordinary procedures in ways that are intended solely to make abortion unobtainable, unaffordable, or discouragingly unpleasant. Examples include requiring multiple trips on different days to a clinic that is often a vast distance from a woman’s home; applying hospital licensing standards to outpatient clinics for abortion only; requiring medically unnecessary ultrasounds at a cost of hundreds of dollars; requiring scripted and false speeches to deliberately upset patients before a procedure – all of them extraordinary burdens that have nothing to do with the ordinary process of licensing and regulating medical clinics, or ensuring informed consent (which, in every other medical discipline, is intended to help patients get what they want and need).
The gun-rights people do have a point about New York City’s regulations: although those regs are not that unusual on their face, the details of their implementation make the legal right of gun ownership essentially unexercisable by many citizens who lack the money, time, or persistence to overcome a burden that is not actually required by the legitimate government function it purports to arise from. But if that difficulty rises to the level of a Constitutional infringement in the case of gun permits, how can the GOP’s outright and unashamed assault on women’s rights to legal and vital healthcare not be seen in the same light?
This puts the right wing, of society and the Supreme Court, in a pickle. If they agree that burdensome and hostile regulations intended to discourage the exercise of a Constitutional right are impermissible even when those regulations are normal and proper other than in the degree of the burden they impose, then they would have to agree that far more invasive regulations serving no ordinary purpose and deliberately intended to actually void a Constitutional right entirely, and even in cases of life-threatening consequences, are that much more obviously impermissible. On the other hand, if they want to continue their assault on women with any degree of logical consistency, it would seem they would have to throw gun lovers under the bus along with them. It will be interesting to see this play out.
I’m sorry to have to say it, but I’m not totally diggin’ this:
It’s from the Sierra Club’s new ad campaign “to remind our representatives who they are actually hurting when they attack the EPA.” I’m entirely in agreement with the goal of the campaign, and even with the message of this ad (“gutting emissions regulations results in greater release of toxins, which can do their worst damage during fetal development”). But I have reservations about its methods.
The obvious function of the ad, of course, is that it plays to the right-wing’s proclaimed concern for fetuses to the exclusion of all other health issues (including, of course, pre-natal care, gynecology, infant and child care, and other such irrelevancies). And the fact that the imagery plays so obviously and shamelessly off of the right wing’s fetish for pregnant bellies – in this case to prod them to do something to improve people’s health, rather than take away their rights to healthcare, is an amusing irony. But it’s just those points that leave me uncomfortable.
First, there’s something in a way defeatist, or at least pessimistic, about the focus of the campaign: because the GOP only cares about unborn fetuses, we have to couch every issue in terms of its impact on fetuses. (“Wear your seatbelt – so your fetus doesn’t get hurt!” “Support solar power – so your fetus will use less oil!” “Don’t spread deadly poisons in the environment – because it might hurt some of the fetuses of the less than 1% of the population that’s pregnant at any given time!”) But surrendering every issue to the religious right’s fetus-fetish takes everyone else in the population out of the picture. Mercury, dioxin, and other poisons in the environment hurt everyone. It matters that young children who have grown out of the right’s preferred age for adulation (i.e., they’ve been born already) are also vulnerable to developmental delays and all the other effects of environmental toxins; it matters that adults are crippled and killed by heavy metal poisoning; it matters that the women who are carrying these favored fetuses are also affected by the poisons they ingest – in addition to the fetuses that are the focus of concern in this campaign: these are the people who are hurt when the right wing attackes the EPA – why can’t the Sierra Club, of all people, say so? It may be true that the right only cares about fetuses (and then largely as tools for hurting women, who are their real obsession), but allowing them to forget everyone else is to forfeit the major part of the fight to them without contest. When progressives’ campaigns have the same focus, same tactics, and same blind spots as the reactionaries they are campaigning against, much is lost even if those campaigns succeed.
The second, and perhaps more striking, issue that arises for me from this ad is the imagery that is used. When I said it leaves everyone but the fetus out of the picture, I meant it literally. This ad replays in every detail one of the most common, and most offensive, tropes of anti-choice misogyny: the faceless pregnant woman reduced to nothing but her belly. (Can’t say “uterus“, you know!) You see it everywhere (and, as @ClinicEscort points out, particularly in stories about abortion): a woman’s body reduced to nothing but swollen boobs and swollen belly, or often just the belly – the face is always cut off, just out of the frame. The effect – and unquestionably the purpose – is to erase the woman from her own pregnancy. It’s fetus porn, with the woman dehumanized just as badly as, and in some ways even more fully than, in sexual porn (where at least you can often see the face). It’s the kind of misogynist metonymy that at least has come to be recognized (if not eliminated) in product advertising, but apparently still goes unremarked in issue or values advertising – even though its major function is to promote the value of dehumanizing women. That it does reflect and promote the right-wing vision of women goes without saying: women as pregnant vessels who are not even named or acknowledged, and certainly have no interests or needs that deserve to be addressed in their own right, could hardly be better illustrated than by photographs of them as exactly that, used in campaigns aimed at denigrating women’s interests in favor of the “interests” of an unborn fetus.
It’s infuriating to see progressive groups use such images and tactics. This goes beyond simply bowing to the reality of the right’s indifference to women by finding another “hook” for an issue; this actively embraces and endorses its dehumanizing methods in order to use them for that other issue – exactly what the right wants. What I want is something better than this from nominal allies.
There’s a provocative post over at the excellent KevinMD Web site:
Overeating is a behavioral problem, not a surgical one
This may seem to be a statement of the obvious, but the solution to a behavioral problem is not surgery. Overeating is not a surgical problem — it is a behavioral one. The problem is not because the stomach is too big and needs to be made smaller. It is a function of how much food is put into the stomach. Surgical “solutions” should be the absolute last resort measure.
The letter – from an Australian physician who touts himself on the Web as a “DIY health” guru – goes on to make a number of good points about bariatric surgery (mostly stomach-banding), couched in terms of clinical efficacy and relative risk: it does not work for everyone; the campaign to expand the qualifying criteria may include patients who have marginal need or expected benefit; there are known side effects and long-term safety is unknown; the promoters are compromised by conflicts of interest. These are all relevant considerations. But the overall tone in the letter, and even more so the comments, is both judgmental and dismissive. (From commenters: “People are obese simply because of their own behavioral inability to control their diet . . . the solution still lies FIRST in the individual admitting his/her 100% responsibility in the problem weight.” “Obesity results solely from laziness and apathy, which consequently are the same traits that are leading to the devolution of our species.”)
The giveaway here is the headline: yes, overeating is of course a “behavioral problem”, not a surgical one, because in this context “behavioral problem” clearly refers to the etiology of a pathological condition (obesity), while “surgical [problem]” clearly refers to the preferred mode of treatment for that condition. The writer conflates the two categories, and then draws an inference from a logical contradiction of his own making: it’s true that the etiology of this condition is not its treatment, but that’s true in every case, so that hardly tells against that treatment considered in and of itself. We can reinterpret the sentence to make sense, but only by making it obviously absurd: either “Overeating is a behavioral treatment, not a surgical treatment” or “Overeating, not surgery, is the cause of obesity”. There is a vacuity of clinical concepts here that suggests something else is at work in the writer’s animosity to certain kinds of treatments.
What the writer is really trying to say is this: “Obesity is caused by behavior, and should not be treated by surgery”. And the logical implication of that statement, and the letter and comments that follow, is this: “Obesity is caused by behavior, and therefore should not be treated by surgery”. The clinical counter-indications for surgery (and medical treatments for obesity – he’s against pills, too) that the writer details do not really seem to be the issue in his mind. Instead, certain treatments are ruled in or out categorically, on the basis of criteria of appropriateness that seem to hinge on his view of what health and medicine are fundamentally about, or how they are fundamentally related. There is a sense that diet is better than medical treatment because it is lower-risk, but also a sense that people who brought their conditions upon themselves behaviorally should be expected to work out their own salvation without clinical intervention. There is a clear implication that the writer would still object to bariatric surgery even if it were safer and more effective, simply because it’s not the kind of treatment he thinks this condition should get, in some essential sense (“obvious[ly] . . . the solution to a behavioral problem is not surgery”). Because the condition is behavioral, the treatment should be behavioral: QED.
From this perspective, the choice of treatments for a given condition depends on some sort of criteria of categorical appropriateness – a determination of what kinds of treatments are appropriate to any given condition, only after which do questions of safety and efficacy come into play. (This becomes more obvious in the letter above when the writer airily dismisses the notorious psychological difficulties of dieting with remarks about “responsibility for one’s actions”.) And this is the question that really got my attention about this issue. The concept of “appropriate” treatment is one that gets to the heart of healthcare as a practice, and of the ethical dimensions of such seemingly scientific concepts as the definition of disease, relative risk, and clinical indications for treatment.
To define clinical indications in some way other than in terms of clinical efficacy establishes medicine as a categorically defined practice: a praxis incorporating certain beliefs or techniques that are “just right”, and eschewing others as “just wrong”. The old ethic of “doctor knows best” exemplifies this idea to some extent (in regard of the roles of patient and physician: the doctor prescribes; the patient complies). More broadly, medical ethics based on a perception of distinctly medical virtues and traditions (Pellegrino’s “internal ethic of medicine”) makes all of medicine categorical; more than that, it moves the locus of medical ethics entirely inside the profession, such that what is right or wrong for a given patient is what is or is not in keeping with the behavioral standards applicable to the doctor. Even more modern theories of medical ethics do the same to the extent that they perceive specific types of treatments as right or wrong in and of themselves.
The movement toward patient autonomy and patient-centered care challenges this ethos at a basic level: the whole idea that patients may determine their own interests for themselves necessarily implies that healthcare is defined as serving those interests (or else we get a macabre dissociation between what patients need and what healthcare is for). The patient-centered ethic has fundamentally reformed healthcare practice in many areas, most notably refusal and termination of unwanted treatments, and more indirectly through the rise of cosmetic, nutritional, sports- or adventure-oriented, assisted reproductive, and other forms of “aspirational” (rather than pathology-driven) healthcare. The idea that what patients need is not determined by the pursuit and maintenance of “normal species functioning” – never exceeding its bounds and normal range, either positively or negatively – throws open a potentially unlimited range of possible treatments for any given condition, and indeed a potentially unlimited range of praxis under any conditions, whether or not defined in terms of disease and treatment. (The body modification movement blows the doors off the disease/treatment model, and increasingly off of any old-fashioned notions of normal species functioning.)
From this perspective, it is impossible even to formulate a declaration of the form: Because the condition is ________, the treatment should be ________. Radically patient-centered care does not require a “condition” to authorize a “treatment”, and takes it as fundamental that some patients may deny that an otherwise-recognized “condition” even exists (as in the case of the “fat acceptance” movement), while others may perceive, personally, a pathology in what would previously have been perceived categorically as normal (as with gender identity disorder). In addition, the particular best treatment for any given patient, whatever their circumstances, will be the one that best meets that patient’s interests as they themselves understand them – which may well be a riskier surgical procedure rather than a more burdensome lifestyle change, or vice versa, as they themselves perceive is best for them.
The significance of this non-categorical, patient-centered, situationally-responsive understanding of healthcare praxis is enormous. Aside from the overt impact on practical healthcare that the patient-autonomy movement continues to have, embracing a truly patient-centered ethic of care guides thinking about how to understand patient needs and how to meet them. In particular, it rules out categorical thinking of the type that prohibits providing certain treatments (with due consideration of cost, risk, and expected benefit) for a given patient or category of patient because they do not conform to some generic standard of appropriateness, and it requires that the patient’s own understanding of their goals, priorities, and risk-tolerance, be the determinative factors. Clearly the message hasn’t reached all corners yet.
Since the anti-choicers are so very concerned about minority interests that they insist on stealing every woman’s autonomy because a potential black leader fetus might someday be aborted, it’s only logically consistent to pay attention to the upside of that issue:
That’s just a fraction of the total, even considering murderers alone. Almost no suspects have ever even been named in the over 200 arsons and bombings, or close to 100 other attempted arsons and bombings, or the literally thousands of vandalisms and chemical attacks committed at health clinics across the US, not to mention the many attempted murders, public “targeting” of chosen victims (some of them later murdered), personal harassment and threats to healthcare providers, and uncountable incidents of on-site harassment and violence directed at clinic staff and patients, that are the stock in trade of Christian anti-choice terrorism.
No person loses their life in an abortion. But here you can see just some of the people who would be alive today if the terrorists above, and others like them, had been aborted before they murdered them. If we’re counting up the possible impact on society, well, there’s only one Obama, but there’s plenty of these shitheads. So, all things considered . . .
[NB: Of course the entire line of reasoning is nonsense. The fact that some unpredictable thing could occur sometime in the future is no reason to force anyone to bring about circumstances that might randomly, but not foreseeably, result in that outcome, even ignoring the fact that it is their decision whether they want to do so. The same reasoning would not only justify mandatory childbirth, but mandatory pregnancy, and in fact mandatory maximum reproduction regardless of risk or cost – since one of those unwanted children might do enough good to offset all the suffering required to produce it. That this is in fact the official policy of the Catholic Church makes it no less insane or misogynist. It’s also illogical: there’s no guarantee that any child – still less an unlimited number of unwanted children imposed by force – will do more harm than good, so the proposition that there’s a harm to society in aborting them is no more provable than that there’s a good to society in doing so, as the above images demonstrate.]
Patti Davis – daughter of Ronald Reagan – has an opinion article in Time Magazine today, arguing against the release of John Hinckley from the psychiatric hospital where he was confined after attempting to assassinate Reagan 30 years ago this week, in the throes of a psychiatric obsession that led him to seek fame through violence. The piece is calm and rationally written, and sympathetically conveys the suffering of the several victims of the shooting and their families. But it’s a perfect example of the dangers of confusing punitive and rehabilitative detention, and of treating medicine and psychiatry as tools for governmental control of citizens’ beliefs, values, or behavior.
This is an odd story from the ongoing saga of the miners who have been trapped underground in Chile for more than a month now, with still some time expected before their rescue.
A small shaft has been drilled to their location, and they have been supplied with food and water, and other amenities, through the tube; at first they were stressed and suffering, but are now apparently in better health. They are also in communication with the surface by phone and video, and are frequently being interviewed and monitored by a team of psychologists who are trying to help them get through their long confinement. But the management of the mental health portion of the rescue effort seems to have degenerated into a power struggle between the psychologists and the miners, with the doctors imposing their own standards of behavior through petty disciplinary actions, provoking the anger of both the miners’ families and the miners themselves, whom they are ostensibly trying to help. The doctors are supported in this by NASA psychologists who have been called in to consult, due to their experience with crews under isolation and confinement for long periods on space missions, but it’s not clear the NASA people have any reasonable sense of how to handle things either. The linked article, which as usual offers few details and no explanatory rationale, seems to hint that this conflict has been staged by the psychologists in order to give the miners a focus for their tensions and keep them from taking things out on each other – which would be a bold but questionable strategy if true, though it’s impossible to tell from this article what’s really going on. At any event, this seems to be a very strange and fraught situation.
”The honeymoon is over,” explains Alberto Iturra, the lead psychologist in the operation to free 33 men trapped 700 metres deep in San Jose mine. As point man for the psychological health of the trapped men, Mr Iturra is at the receiving end of the rage of relatives of the miners who are upset at the Chilean government’s refusal to deliver letters considered ”psychologically inappropriate”.
The widespread censorship of letters to and from the miners – which the government now claims has ended – acted like a spark to ignite what was already a simmering conflict: family members ever more desperate for their loved ones to be rescued and the government medical team battling to keep the miners psychologically united and working as a group.
”The honeymoon lasted two weeks,” said Dr Jorge Diaz, the lead physician in charge of monitoring and maintaining the health of the 33 men. ”Now the men are starting to demand certain things and we begin to restrict others. We are measuring each other’s strength.”
With their health improving and patience expiring after six weeks underground, the 33 miners are restless. On several occasions, they have refused to talk to psychologists, cancelled a series of meetings with doctors, delayed implementation of vaccinations. The men have few problems, however, making their desires clear: cigarettes and wine.
Over the past 10 days, the Chilean government’s psychological team has ceded to certain demands. Last week, the initial delivery of cigarettes was sent down the 700-metre tube that is essentially a lifeline to the trapped men and widely known as the ”umbilical cord”. . . .
In an effort to dominate the miners, the team of psychologists led by Mr Iturra has instituted a series of prizes and punishments. When the miners behave well, they are given TV and mood music. Other treats – like images of the outside world are being held in reserve, as either a carrot or a stick should the miners become unduly feisty.
In a show of strength, the miners have at times refused to listen to the psychologists, insisting that they are well. ”When that happens, we have to say, ‘OK, you don’t want to speak with psychologists? Perfect. That day you get no TV, there is no music – because we administer these things,”’ said Dr Diaz. ”And if they want magazines? Well, then they have to speak to us. This is a daily arm wrestle.”
After weeks of demands, the miners are now focusing on a few precious requirements – they want daily letters from their families and wine to celebrate Chile’s Independence Day today, particularly noteworthy this year as Chile celebrates its bicentennial.
While NASA experts brought to Chile as advisers have recommended sending the wines and withholding the cigarettes, the Chileans have done the opposite, saying the miners have nearly two kilometres of ventilated tunnels to smoke a cigarette and relax (as opposed to the confinement of space travel) while further noting the average miner consumes large quantities of alcohol. . . .
Despite rising tensions, the medical and psychological team is content, and they have received glowing reviews from the team of NASA psychologists. Furthermore, many of the symptoms now being shown by the miners are typical of group dynamics when people are placed in confined and stressful environments for more than six weeks.
”NASA told us we have to receive the arrows, so that they don’t start shooting the arrows at each other,” said Dr Diaz.
”So we are putting our chests forward – now they can target the doctors and psychologists.”
It seems as if the psychological team has taken it upon themselves to impose their own view of optimal healthy behavior for the miners: no smoking, no alcohol, no psychologically stressful communications. But of course the miners prefer to live as they have chosen to on the surface, whether or not it’s optimal for their physical health – as in fact we all do, under ordinary conditions. Normally, these doctors would have no say in how the miners live; only the fact that they now physically control the miners’ access to the things they want gives them the opportunity to impose their own choices, and they have assumed the authority as experts to do so. But as the doctors themselves acknowledge, it’s apparently not actually dangerous for the miners to smoke or drink underground when they’re just waiting to be rescued and have an adequate air supply, so there appears to be little reason not to give them what they want. The doctors have responded to the miners’ insistence on making their own decisions by imposing punishments, actually withholding things that would be to the benefit of the trapped workers, and essentially behaving like the wardens of an accidental prison.
It’s worth noting that “crew mutinies” have been a frequent feature of NASA space missions – and NASA has generally responded punitively as well (deliberately destroying the careers of a number of astronauts while pretending that everything was OK). There is obviously a complex psychology to being confined in a small space under dangerous conditions (especially, I would think, as the result of accident), and it’s clear that the “experts” know little about it, cannot predict its consequences, and have developed only the most limited and heavy-handed tools for managing it. The authoritative mindset that allows doctors to assume that they have to “manage” other people’s emotional states in the first place encourages experts to demand obedience in even the smallest things, to defend their prerogative to do so by citing a dubious scientific justification, and to enforce their demands with tyranny and retribution. That NASA supports that approach in this case may be grounded on a real basis of experiential knowledge, but their own history suggests they have only limited skills or insights in such matters. (The fact that NASA didn’t appreciate, in this case, that there’s a difference between a space station with a recirculated air supply and a miles-long underground tunnel with unlimited air, or between military-style missions by highly trained crews sworn to obedience operating in technological environments and the rough-and-tumble world of hard-rock mining, also calls their insights into question.)
The suggestion that this is to some degree planned – that the doctors are deliberately antagonizing the miners in order to unify them against the doctors themselves and prevent intra-group tensions – is the most provocative aspect of the situation. If this is true, the seemingly punitive measures the doctors have taken are more understandable, but still require justification. First of all, these kinds of “reverse psychology” power struggles seem more like clever tricks than real psychotherapeutic techniques. I don’t know if there is any research showing that withholding privileges to miners trapped underground is in fact likely to increase their psychological strength, as opposed to, for instance, increasing their stress and causing them to break down, but unless there is a real reason to think this sort of thing actually works, it amounts to nothing more than a risky and cruel experimental exercise by the doctors. And even if there is some reason to think it could help, it’s also not obvious why we can’t just trust the miners – people who depend on each other while risking their lives in that mine every day – to take care of themselves.
It’s possible that this incident is being handled with sophistication and professional dedication, by doctors who have boldly made themselves the instruments of their own “patients'” salvation. But it’s also possible – and more than plausible – that this situation has gone out of control due to the self-aggrandizing and scientifically ungrounded lust for power of petty tyrants who resent being thwarted by those they claim authority over. What seems certain is that the miners themselves know their own wants and needs, and those wants are not unreasonable; that it is simply assumed to be out of the question to let them manage their own health, physical and mental, under conditions in which they are dependent on others for the means to do so, is as telling as whatever the actual outcome of this situation may be.
There’s a lot of blogging today over a sensationalistic post at NRO by Shannen Coffin, a former Bush lawyer who was responsible for anti-choice litigation surrounding the so-called “partial birth” abortion ban. She He notes a 1996 memo from the files of the Clinton administration, predating Clinton’s veto of the anti-choice bill, in which Elena Kagan, then a Clinton legal advisor, recommended a change in language in the policy statement eventually issued by the American College of Gynecologists supporting their opposition to the bill. They originally stated that “in the vast majority of cases, selection of the partial birth procedure is not necessary to avert serious adverse consequences to a woman’s health”, and that they “could identify no circumstances under which intact D&X would be the only option to save the life or preserve the health of the woman”, but – on Kagan’s recommendation – clarified that by also noting that it “may be the best or most appropriate procedure in a particular circumstance to save the life or preserve the health of a woman”. (Note that ACOG explicitly reaffirmed this policy, using the same language, at least three more times, in 1997, 2000, and 2003). That policy statement was later referred to by at least one federal judge, in litigation on the constitutionality of the ban later enacted by Bush.
Coffin’s conclusions are that this is a “distortion of science”, that “language purporting to be the judgment of an independent body of medical experts devoted to the care and treatment of pregnant women and their children was, in the end, nothing more than the political scrawling of a White House appointee”, and that “Miss [sic] Kagan’s decision to override a scientific finding with her own calculated distortion in order to protect access to the most despicable of abortion procedures seriously twisted the judicial process” – naturally she he rolls this up into the ongoing Kagan Supreme Court confirmation hearings as well. The right-wing idiotocracy is all a-Twitter, too, natch: Powerline declares this is a “smoking gun” and “shocking”; Riehl calls it “misrepresenting science” and “dishonest”; the risible Betsy, of Betsy’s Page, reads this and concludes that “there was a doctors’ opinion that said that partial birth abortion was not necessary and she, with no medical background at all, drafted a statement that said the exact opposite”. Yuval Levin, the severely bioethics-challenged former staff manager of Bush’s Presidential Council on Bioethics, declares this to be a “war on science”, “astonishing”, and “easily the most serious and flagrant violation of the boundary between scientific expertise and politics I have ever encountered”.
This sort of nonsense is particularly astounding from Levin, who was a central player in the workings of an “ethics” commission that remains a watchword for right-wing distortion and duplicity, whose major policy statements drew dissenting opinions from its own most scientifically-qualified members, and which then censored, and later fired, those same members. Levin – a political scientist and former Bush White House policy staffmember who has spent his entire career crafting right-wing bioethics policy – also castigates Kagan for her lack of medical expertise and her involvement in healthcare policymaking. You really just can’t make this stuff up.
It’s especially disingenuous for people like Levin and Coffin – political hacks whose entire career consists of trying to influence policy to fit their ideological leanings, from both inside and outside the government – to claim that there’s something untoward in political policy staff conferring with the policy-making boards of professional organizations to shape language on statements issued in clearly political and legal contexts. That sort of thing goes on all the time, and it’s appropriate for such bodies of experts to confer with political authorities to ensure that their statements are effectively written and focused. It would be inappropriate for them to turn themselves over to the political authorities as tools of policy, and to issue statements they did not believe were true, but it’s not inappropriate to get guidance on language and emphasis in order to convey an effective message. (As Coffin herself notes, ACOG already opposed the anti-choice bill. Obviously they would want their policy statement to reflect the reasons why.) To suggest that a policy expert drafting language for a policy statement endorsed by a professional body is somehow scandalous – let alone unusual – is simply stupid. And to suggest, as Coffin and others have recklessly done, that ACOG is somehow compromised or tarnished in doing so, is not merely stupid and dishonest, but libelous.
Aside from the completely manufactured, and fictional, scandal that the right-wing noise machine is busily whipping up over this, there is also the simple fact that the language Kagan suggested does not replace or contradict the language previously present. The statement that there are “no circumstances under which intact D&X would be the only option” is entirely compatible with the claim that it “may be the best or most appropriate procedure in a particular circumstance to save the life or preserve the health of a woman” (emphases added). It’s simple, really: the fact that something is never the only option in no way means that it is a bad option; the revised language not only implicitly acknowledges this but clarifies for the dim-witted (i.e., conservatives) the even more important point that it is in fact sometimes the best option. (Obviously, Intact D&X is never the only option: you can always perform an unnecessary Cesearean section or force the woman to deliver a fetus that may be dying and may possibly kill her – options that are much prefereable, for conservatives, than allowing a woman to choose the safest option on her own authority. ACOG’s point, which Kagan nudged them towards, is that there are often better options – and that women should have the right to choose them.)
The fight over Intact D&X was particularly nasty because it encapsulates so much of right-wing misogyny, so clearly: it was not a ban on abortion, and it was not a ban on late-term abortions; in fact, it did not ban any abortions under any circumstances. It was only and entirely a ban on one particular procedure for performing abortions. It banned the procedure that was preferable in specific circumstances – leaving abortions entirely legal under those circumstances but forcing women to submit to a procedure that was less safe and more debilitating for them. It was straightforwardly an attempt to punish women by making them accept higher risks and a lower standard of care, as the price for choosing a procedure the right wing disapproved. And ACOG’s policy statement implicitly recognized this: it notes that there are always alternatives to the ID&X procedure, but that in some circumstances those alternatives are worse, and ID&X is, in those circumstances, the best or most appropriate procedure. Kagan’s contribution – appropriate, useful, and highly pro-woman – was to encourage them to clarify that distinction. (Note, again, that ACOG explicitly reiterated this policy, and the important distinction it makes, three times after Kagan supposedly “overrode” their scientific judgment in the matter by forcing them to include language that does not contradict that judgment.)
Raising this issue is simply another example of the right-wing’s reflexive insanity over sex and abortion, coupled with their inherent inability to read and comprehend basic logical statements. (Note “Betsy”‘s analysis: “there was a doctors’ opinion that said that partial birth abortion was not necessary [no, there simply wasn’t] and . . . [Kagan] drafted a statement that said the exact opposite” [no, she didn’t].) Honestly, the relationship between “not the only” and “sometimes the best” is really not that tricky. It’s too tricky, of course, for the average right-winger, and for people like Coffin and Levin, whose deficiencies were all too apparent back when they were writing policy for Bush, but to people of normal intelligence and reading comprehension, this entire farce is an obviously groundless, and all-too-familiar, political hackery.
The right wing is also up in arms over this because, as Scott Lemieux at Lawyers, Guns, & Money notes:
the only point of this feeble “smoking gun” is to allow Senate Republicans to mention the phrase “partial birth abortion” a lot [and] I should note once again that for reasons Judge Posner and Justice Stevens have explained the entire issue is a farce. The distinction between D&X abortions and other abortion procedures is wholly arbitrary, and for people who have supported irrational laws making such a distinction to pretend to care about rigorous medical science is nothing but comedy of the lowest form.
Mahablog was fast out of the blocks on this, in a post I wish I’d written:
if you actually understand the issue in question — which leaves out righties, naturally — you’d know there is no “there” there. . . . Somehow, in the fevered imagination of righties, a professional organization representing 90 percent of U.S. board-certified obstetrician-gynecologists was duped by Kagan into telling a lie, or something, and because this wording came from Kagan it must not actually reflect the views of ACOG. . . . no scientific finding was “overridden,” just clarified, and ACOG must have agreed with the statement or they wouldn’t have continued to repeat it in their position papers ever after.
Lemieux gets the content issue exactly right:
There’s no contradiction between the two drafts, because D&X abortions are, in fact, not medically necessary in a majority of cases. But this fact doesn’t mean that they are never medically necessary, and indeed the original statement implies that there are cases where D&X abortions are necessary or preferable for a protecting a woman’s health. Adding a statement to clarify what was implicit in the first draft doesn’t “distort” anything, and of course if ACOG didn’t think the statement was accurate Kagan had no power to get them to change it. There’s nothing here.
UPDATE: Corrected pronouns referring to Coffin; he’s a “he”, not a “she”. My apologies to Coffin for the mistake.
UPDATE: Another right-wing website breathlessly announces that Kagan “pressured a second group” on its wording of its pro-choice policy. That group was the AMA. Their claim: “Kagan discussed with other Clinton administration officials whether the AMA could reverse its policy saying there is not an identified situation in which partial-birth abortion is the only appropriate method of abortion. The AMA also noted ethical concerns with partial-birth abortions and said that it should not be used unless it is absolutely necessary.” Note that this repeats exactly the same mistake all the other commentators made about the first memo: the two positions described are not contradictory, and there is no “reversal” in evidence! And Kagan’s particular crime: she wrote an e-mail saying “We agreed to do a bit of thinking about whether we (in truth, HHS) could contribute to that effort . . . . Chuck and I are meeting with the AG on Tuesday; Donna offered to send over some doctors this week”. They don’t even identify who the e-mail was sent to (obviously it was internal), or whether any such meeting ever took place, let alone had any effect. (Apparently the AMA does the bidding of any government staff lawyer who offers to “contribute” to their policy development.) Truly, the stupid knows no bounds with these people.
This book review is excerpted from a detailed review in the American Philosophical Association Newsletter on Medicine and Philosophy, v. 10, n. 1, Fall 2010.
Bioethics addresses issues shaped by abstruse empirical fact and the technical parameters of the technologized controversies of contemporary culture. It is tempting to imagine that our philosophy must be as technologically-informed as our understanding of our lives has now become – that human flourishing must be in some ways dependent upon technological problem-solving, that the range of values and possibilities accommodated within the morally good life is wider than previously imagined, and that these observations define a particular stance, critical but welcoming, toward the prospect of aggressive engagement with the future through the tools and products of science.
Something like that is the position ascribed to “progressive bioethics” by the authors of the just-issued essay collection, Progress in Bioethics: Science, Policy, and Politics. The volume collects almost 20 essays on questions of the nature of bioethics as a field, its relationship to progressive ideology, and the ways that relationship plays out in particular issues and controversies characteristic of the field now and in the past. The authors are a roll-call of respected and influential figures in contemporary bioethics, not all of them academics, subscribing to a wide range of perspectives on progressivism and the task of progressive bioethics. The impression they give is of a fluid and open-minded community, engaged in a searching and sometimes indeterminate discourse with itself and the wider world.
The Foreword, Introduction, and essays of both Section I: “Bioethics as Politics” and Section II: “The Sociology of Political Bioethics” investigate the nature of progressivism, the issues that are or should be of interest to progressive bioethics, and the practicalities of politics and policy that bioethics is often involved in. Section III: “The Sociology of Political Bioethics”, addresses questions of the professional identity of bioethics, and how progressive ideology meshes with other personal and professional values. Section IV: “Conflicting Views of Biotechnology” contains one unabashedly pro-technology piece, and another warning against an uncritical stance on science. The concluding Section V: “Progress Beyond Politics”, offers higher-level reflections on the field of bioethics in general. In the “Afterword”, the editors remark upon the prospects for progressivism and healthcare reform in the advent of the Obama administration – a question that could not be more timely.
Necessarily, there are gaps: the definition of progressivism needs further exploration, and it remains unclear why progressivism should have any of the content suggested for it; at times the content or scope of bioethics also seem taken for granted. Even the role of science in progressive bioethics awaits further examination. These are not faults in a collection of diverse viewpoints; however, much remains to be discussed. This volume opens that discussion insightfully, searchingly, and provocatively.
Progress in Bioethics is must-reading for political progressives interested in biomedical issues, bioethicists who identify as political progressives, bioethicists in general who are interested in the conceptual landscape of contemporary biomedical policy and cultural controversy, and for those who seek to develop a humanitarian pro-science viewpoint, whether on biotechnology or other complexities of our technologized modernity.
Dr. Jack Cassell, in Florida, is getting press today for the cranky, obnoxious note he posted on his office door:
The text reads:
If you voted for Obama . . .
seek Urologic care
Changes to your healthcare
begin right now
not in four years
He apparently also fills his waiting room with anti-Obama literature, signs about what “the morons in Washington have done to your healthcare” (NB: nothing has changed about any of his patients’ healthcare; he is the only one who has done anything so far), and explicit instructions on who they should vote for.
In response to concerns that he might be politicizing his care just a tad, he argues “I’m not turning anybody away — that would be unethical. But if they read the sign and turn the other way, so be it.” So of course he’s not actually doing anything to make patients feel uncomfortable by explicitly telling them to leave his practice because he disapproves of their politics; they just happen to choose to seek another doctor for reasons unrelated to his behavior or his treatment of them.
There’s been commentary over whether this infringes any laws or principles of medical ethics. His supporters claim he is justified in behaving this way because doctors, like everyone, have a right of free speech. There’s a lot to be said about that – most notably that the whole point to medical ethics is that professional practice and the professional relationship impose standards more stringent than those incumbent on ordinary citizens. Simply having a right of free speech does not justify acting like a jerk toward your patients; the treatment relationship is one-sided, predicated upon the doctor’s commitment to service of the patients’ needs, not their approval of the patients’ politics; admission as a professional is predicated upon acceptance of those standards, and a willingness to put one’s personal inclinations aside in the professional arena.
But aside from that, what strikes me about this situation is the general attitude it reveals. Not only does this doctor fail in the face of any of the above standards, but it seems obvious he simply conceives of medical practice as something that does not in fact entail the authority of such standards or commitments. Doctoring is apparently a job, to him – something he can do if and as he chooses, and which does not impose on him any obligations he does not happen to want to meet. He is – to all appearances – essentially the doctor in Ayn Rand’s Atlas Shrugged, who joins with the amoral capitalist runaways to form a free-market society founded on hard money and ethical egoism. Being a doctor does not require him to do anything for anyone if he doesn’t feel like it, and it doesn’t require him to accept as a patient – or even keep as a patient anyone he has already accepted – who does not personally agree with him on any matter of his choosing.
What I fear, but perceive, is that this attitude is becoming more widespread. Doctoring is just a job, it seems, in the minds of more and more doctors, and in the minds of the right-wingers who are so afraid that Obama is going to destroy healthcare by making it less capitalist. (As usual, facts are of no moment to the right-wing panic apparatus: it is this doctor himself who is “changing” healthcare for his patients – his own sign says so – but he still manages to blame it on Obama. And it is this doctor who has made healthcare hostile and unwelcoming for his own patients – he is, not a death panel exactly, but a one-man jerk panel to his personal caseload – but they deserve it, he seems to think, because they voted wrong.) Whatever the consequences of Obamacare, I fear that it will be simply impossible to destroy medicine in the US because there will be no medical profession left to destroy – just a bunch of entitled, self-absorbed jobsworths whining about how much less they like their jobs now that the glamor and remuneration has started to fade and they’re left with nothing more than providing better care to more people, which is such an imposition.
Democratic Congressmember Alan Grayson, who represents that district, was notorious for (accurately) characterizing the Republicans’ healthcare policy as “Die quickly”. He notes about Dr. Cassell: “Maybe he thinks the Hippocratic Oath says, ‘Do no good.'” That’s about the size of it.
The latest entry in the “creepy personified fetus” category: the “Feti” – weird/cutesy Christmas-tree ornaments shaped like tiny embryos at about the 6-8 week stage (bulbous head, no digits, visible tail). As is usual with this genre, they sport adult-appropriate personal characteristics, including clothes, personal possessions, and in one case a moustache. You can buy Santa fetuses, “happy” fetuses, candy-cane-carrying fetuses, and an “Adam Lambert” fetus displaying a punk hairdo and clutching a Star of David – a cultural mishmash that I refuse to attempt to understand.
The purveyor of the site insists that “Feti is just for fun, no political statements being made here.” I’m tempted to believe that in her case, but the thing still strikes me as weird, and indicative of a mindset that is worth noting.
The vendor suggests these are intended as gifts for expectant parents, as appropriate additions to the “Baby’s First _____” category of remembrances. (Exactly how, I’m not sure: “Baby’s First Disembodied Hanging on a Christmas Tree”?) In that vein, they play off the very common and understandable practice of many expectant parents in personifying their fetus as it develops – talking to it, playing music, naming it before it is born, and so on. They also seem to accept as a cultural commonplace the fetishizing – literally, in this case! – and personifying of the fetus that is a mainstay of anti-choice propaganda. (Anti-choicers often wear gold-plated fetal-footprint jewelry, and they are forever trying to force abortion patients to look at pictures or sonograms of the fetus.)
I don’t know if the anti-choice movement has so far succeeded in turning the fetus into a fetish object that you can now literally market them to the general public as holiday ornaments, or if the common desire to see fetuses as sort of reverse-extensions of babies simply makes this a natural marketing move, like Cabbage Patch dolls or those weird Anne Geddes photographs of babies in flower petals, and the right wing has merely piggybacked off that common emotional trope for their own purposes. The former would scare me a bit, the latter is merely infuriating. Either way, this sort of thing leaves me with a creepy feeling.
I’m happy for people to be happy about their pregnancies, and to embue their future offspring with emotional valence or even a somewhat overgrandiose sense of promise or accomplishment. In the same way that all parents think their kids are smart and talented, and I wouldn’t quarrel with that, expectant parents can and should go ga-ga over the cute little buns in their respective ovens. There is no point, in the case of people’s emotional experience of the events in their lives, to go around insisting to them “you know it has no functional higher nervous system, right?” . . . “that’s not a ‘person’ you’re carrying, in any meaningful sense of the term – just wanted to let you know” . . . “don’t get too close to it – there’s about a 1-in-12 chance you’ll lose the pregnancy”. But when it comes to law and policy-making, clear distinctions do have to be made – and at that point, the conflict between stark reality and parents’ expectations may be uncomfortable.
Regardless of parental beliefs, not all kids are smart or talented, and thus some won’t make it into selective academic or sports or art programs. And regardless of the fervent, desperately dishonest myth-making of the anti-choice right, the early fetus is not a person and does not make moral claims on a woman’s body and life sufficient to override her autonomy. It is unfortunate to have to disappoint people emotionally invested in believing otherwise, but it is far worse to make policy based on wishful thinking in defiance of the truth.
By all means, have yourself a merry little Christmas, and hang a smiling Adam Lambert Jewish punk fetus upon the highest bough. But let’s keep the “personified fetus” myth firmly in its place when we go to making important decisions about real issues in real people’s lives.
So, much has been made this week of the fact that the Republican National Committee, throughout its longstanding berserker campaign against women seeking control of their own bodies, has in fact been providing comprehensive healthcare insurance to its own employees – including female employees – for almost 20 years. Many fingers were pointed over the hypocrisy of attempting to prohibit abortion access for all women in America by every means possible, while covering abortion care for its own employees under their internal health insurance plan. (This in fact is in keeping with right-wing approaches to the issue generally: their values legendarily evaporate when it’s their personal interests at stake, and stories of women’s clinics providing abortion care to the same women who were picketing those clinics before and after the procedure are legion.)
Predictably, Michael Steele, the hapless RNC head, announced less than 24 hours after the story broke that that coverage provision had been rescinded unilaterally. The usual right-wing hysteria has erupted, with demands that people be fired and angry denunciations that donors to the RNC had not been allowed to deny healthcare to its female employees as they wanted to do. As Ben Smith rightly points out, not one female employee of the RNC – the ones whose coverage has now been stripped without their consultation (and presumably without any reduction in their premium contributions) – has been quoted or consulted in this move.
I note also that pro-choice ideology within the Republican party has run at about a steady 35-38% for most of a decade (a recent poll shows it down somewhat among Republicans, but is widely regarded as an outlier). I presume the large majority of those are women. Assuming further that women are half the GOP membership, that would mean that roughly two-thirds of GOP women are pro-choice (I suspect they’re actually less than half the membership, which would push the prevalence of pro-choice ideology even higher within that smaller female group). Now, I don’t know if the RNC employee base is representative of the Republican Party generally, but if it is, that would mean that about a third of its staff, and about two-thirds of all its female staff, are in favor of abortion rights. There are other factors to be considered, for which we don’t have data (what percentage favor having abortion covered in their health plan, as opposed to its just being legal; to what degree the RNC staff skew even crazier on abortion than the rank and file; what percentage of the staff are female; and so on), but any way you slice it it seems inevitable that there is at least some considerable degree of support for abortion services among the RNC’s staff, to say nothing of the GOP generally. Yet the RNC leadership revoked their own staff’s coverage without consultation, and without the slightest apparent consideration for that staff’s wishes, needs, or rights.
The message is clear enough, and, I suppose, fair and consistent in that peculiar GOP way: for Republicans, hurting women is more important than anything else – certainly more important than providing real healthcare for an entire nation, but more important also than seeing to the needs of their own membership. The Republican National Committee – a body that exists solely to cater to the interests and welfare of registered Republicans – stripped healthcare services that had been available for almost 20 years away from Republican women employed in the service of that body and their party, without the slightest hesitation or apparently without even talking to them. Within the highest levels of the Republican Party itself, your lack of status as a woman trumps your preferential status as a Republican.
Michael Steele could have just made it much more simple and direct:
Goldman Sachs has just issued a helpful report for the insurance industry, identifying the profit potential for them in various likely outcomes of the current healthcare access reform initiative. Their conclusion: the best thing for the insurance companies is no reform at all, followed by the weakest possible reform; the worst thing for them is real reform with universal access and a publicly-backed plan option.
In other words: the current disaster of a system is the one that provides the greatest possible profit potential to the insurance industry; any effort at increasing access to care is against that industry’s interests, and a robust and successful reform effort is the worst possible thing from an industry whose profits are entirely dependent on charging the highest possible premiums and delivering the least possible care.
The Senate Finance Committee bill, which Goldman’s analysts conclude is the version most likely to survive the legislative process, is described as the “base” scenario. Under that legislation (which did not include a public plan) the earnings per share for the top five insurers would grow an estimated five percent from 2010 through 2019. And yet, the “variance with current valuation” — essentially, what the value of the stock is on the market — is projected to drop four percent.
Things are much worse, Goldman estimates, for legislation that resembles what was considered and (to a certain extent) passed by the House of Representatives. This is, the firm deems, the “bear case” scenario — in which earnings per share for the top five insurers would decline an estimated one percent from 2010 through 2019 and the variance with current valuation is projected to be negative 36 percent.
What the firm sees as the best path forward for the private insurance industry’s bottom line is, to be blunt, inaction.
The study’s authors advise that if no reform is passed, earnings per share would grow an estimated ten percent from 2010 through 2019, and the value of the stock would rise an estimated 59 percent during that time period.
The next best thing for the insurance industry would be if the legislation passed by the Senate Finance Committee is watered down significantly.
Coincidentally, no doubt, the report arrives from Goldman Sachs – recipient of uncountable billions in public bailout dollars for their executives’ bonuses, from the Obama administration – just as the healthcare access reform plan being pursued right now by that same administration is nearing its final legislative conflict. Goldman helpfully notes in a disclaimer that the firm “does and seeks to do business with companies covered in its research reports.”
All you have to do to see how utterly repulsive the healthcare insurance industry is is to simply watch how they talk about their own business. It is impossible to be disgusted enough by an industry that – uniquely in the industrialized world – treats people’s bodies, health, and lives as saleable commodities in a free market in misery.
The AP reports that Scott Roeder, the terrorist who killed Dr. George Tiller, publicly and in cold blood, last May, has openly confessed to the crime and justified it with the usual religious-radical gibberish about “unborn children”. In the article, he explicitly equates fetuses with independently-living persons and claims that killing to prevent abortion is justified if at least one forced pregnancy results; he encourages others to perform similar terroristic murders, and states he intends to base his legal defense on an argument for a religious-political justification for murder. None of this is new, except possibly that he has stated all this on record now. It confirms what we knew about him, anyway.
The real question is whether those who are so agitated about real or imagined terrorism of other kinds (especially by Muslims), and who have been so complacently accepting of anti-woman terrorism in the US for decades, will condemn or even acknowledge an open statement of Christian religious-terrorist ideology in the case of yet another anti-choice fanatic.
Just this week we’ve seen a terrible mass murder committed by a Muslim military officer who was apparently distraught over the war in Afghanistan and his possible deployment. Literally before the bodies were cool, various right-wingers jumped in to denounce “Muslim terrorism” and to cite vague links between the suspect and Al Qaeda (he visited a mosque which was also visited by someone who knew someone who was connected with Al Qaeda); however, it is not clear that the apparent perpetrator’s motives were intended for a political end at all – as opposed to merely an outburst of personal anxiety – and there is little to suggest that it was terrorism in any reasonable sense. The murders of doctors by anti-choicers, beyond any question, are defined by the features of terrorism found in most of the commonly-used definitions: they are acts of violence committed against civilians for the purpose of inciting fear in other, third-party individuals, to promote a particular political end. We heard nothing of this at the time of Dr. Tiller’s death (nor of any of the previous murders and other acts of violence); will we hear it acknowledged now that the terrorist has so openly proclaimed his murderous religious ideology?
Anti-choice terrorism is intended to prevent women from exercising a legal and moral right involving their bodily health and autonomy, by terrorizing those women and their healthcare providers – it is violence intended not merely against its chosen (often random) targets, but to terrorize and thus paralyze a larger group, to further the religious and political ideology of the perpetrators and their vast army of supporters and admirers within the religious right. Yet it has never been acknowledged as such, and the large subculture on the right wing who have made a profession of terrorism scare-mongering have never acknowledged the persistent anti-choice terrorism ongoing in the US. (Nor has the FBI: fake anthrax attacks had been staged on almost 700 abortion clinics in the US in the days before 9/11 – not one of them resulted in an arrest, or any obvious urgency about the issue, and they were not treated as domestic terrorism. One person was charged with terrorism for fake anthrax attacks on clinics in the wake of 9/11 and the Congress anthrax mail attacks – the first and only such charge in the entire history of anti-choice terrorism. None of the anti-choice murderers, including Roeder, have been charged as terrorists.)
Now we have an admitted terrorist openly advocating further political killings to promote his religious obsessions. If Roeder were a Muslim and his targets were not women and their healthcare providers, the shrieking loons of the right would be off their heads screaming about his crime, his religious beliefs, his unrepentant stance, his advocacy and rationalization of violence, and his links to other extremists with similar religious and political beliefs. Will we see even the slightest acknowledgment of Christian anti-choice religious terrorism and its dangers in this blatant case?
At this moment, debate is proceeding on the House votes on the landmark healthcare bill. I haven’t blogged about it, because, frankly, it was overwhelming and I didn’t know what I could say that would help. (The Democrats’ stealth approach to bill-crafting, while possibly politically astute, made it hard to get a clear handle on the thing, too.) This will be, without question, one of the most important legislative events of my lifetime; if the bill passes the Senate and is finally voted into law in a reasonably intact form, it will be the most significant development in American history that I will see. More importantly, it will be – largely, though not entirely – an end to crippling insecurity and lifelong anxiety for hundreds of millions, and of irremediable pain and suffering for tens of millions who now live in the only affluent country that permits its business class to sell life itself for profit.
The bill on offer is far from optimal. It locks in the profiteering on death and misery that the vast majority of the country is burdened with, and is needlessly complicated and limited in what it offers to the rest. It deliberately cripples its own modest offering by restricting it only to those whom the profiteers have absolutely refused to serve at any price, prohibiting the rest of the country from accessing healthcare organized on any saner and more humane basis. But worst of all, the bill is being held hostage by the insane and vicious anti-choice army that infests the right wing and has wholly captured the Republican party. And, too predictably, the omnipresent contingent of grandstanding asshole Democrats is giving them exactly what they want, as they always do.
Right now, the “Stupak amendment” is being debated: an amendment that will prohibit any person enrolling in the government-backed “healthcare exchange” – which is to say, the poorest and most desperate, who are the only ones eligibel to enroll in that plan – from being offered a full range of healthcare services in cases of unwanted pregnancy. For those people, the “public options” will be forced pregnancy, death in childbirth, or an abortion that she likely can’t afford and the right-wing terrorists have likely made unavailable anyway. The Republican House caucus has already stated explicitly that they will refuse to vote for the healthcare bill in any form. But they – with their unconscionable Democratic allies – are holding up the bill to demand the anti-choice amendment in a bill they will not support even if they get it. And enough Democrats are equally indifferent to women’s lives and women’s needs to help them do it.
Democratic women are putting up a good fight – and their male allies deserve thanks, too. The Republicans have shrunk from merely legislative misogyny to outright thuggery, as they so commonly do. Michele Bachman led crowds of right wingers through the Congressional office buildings earlier today, invading offices and screaming at people to, in her words, “scare” them away from supporting women and healthcare for all. House Republicans staged an organized disruption on the floor today, systematically interrupting Democratic women as they spoke in favor of women’s interests and full healthcare coverage. The healthcare debate is being conducted the same way the Florida recount was in 2000: in the face of Republican assaults and intimidation, and without regard for the truth or significance of the actual substantive issue.
I have little to say about the whole thing. I feel helpless – particularly frustrating in the face of an issue so central to my personal and professional concerns – and am waiting as on election night for the outcome of votes that will – with great good luck – mean so much to so many, and move American one huge step closer to the decency and commitment to humanity that has been so sadly lacking in so much of our history. I can only wait and hope, like everyone else. In the meantime, there is an organized, vicious, and relentless minority that is fiercely dedicated to their own hostility to any notion of a decent regard for others, and to the freedom of others to live their own lives unconstrained by that minority’s backward and reactionary values. They are fighting – in the most literal sense – right now to keep tens of millions of people at the mercy of any illness they may suffer, to keep hundreds of millions at the mercy of an insurance system that rivals only those reactionaries themselves in its hostility to the needs of the people they nominally serve, and to keep every woman in America at the mercy of the nasty and bitter men who despise them and their bodies.
I can’t stand watching this unfold. And I can’t say, can’t express even fractionally, how much, how gut-wrenchingly much, I hate and revile these disgusting creeps.
UPDATE: Rayne at Firedoglake reports “Stupak Amendment Passes: 64 Dems Ask for Primary Opponents“. That’s exactly how I feel about it. I had already promised myself that I would contribute to the primary opponents of any misogynist Democrats; I’m saddened, and shocked, that there are so many of them. I will certainly target all that I can afford to. Read the rest of the post; it’s exactly right.
UPDATE: The final bill has passed, 220 – 215. Exactly one Republican voted in favor – 39 Democrats voted to withhold healthcare from over 40 million Americans. This is a great – but very partial – victory. There still remains the Senate bill – which will be a far tougher fight, with looser rules and a larger percentage of heartless and misogynist Democrats in the mix – followed by the conference committee and the final vote. The Republicans and reactionaries will do everything they can to destroy other people’s hopes for a decent life, and their control over their own bodies and life plans – the rioting, disruption, demagoguery and thuggery seen today are just a taste of what is coming. And this step, momentous as it is, comes bitterly. The discussion in the followup post at Firedoglake captures it perfectly; as one commenter put it: “It’s like winning a huge battle, but half of your friends were killed or wounded.”
UPDATE: I’ve added the reference to Democrats in the headline. I didn’t make it clear above that Bart Stupak, who led the charge to destroy healthcare reform for over 300 million Americans if they didn’t let him destroy autonomy for 150 million female Americans, is a Democrat. Along with 63 other misogynist traitors, he put the people’s party against 51% of the people, to indulge their personal medieval religious obsessions. Fuck him and all of them.
UPDATE: Scott Lemieux at Lawyers, Guns, and Money gets the power dynamic exactly right: “Certainly, there are many potential criticisms of how Democratic leadership has dealt with health care, although when you actually care about expanding access to health care it’s hard to negotiate with the Stupaks of the world who don’t, but want to use other people’s progressive impulses to attack women.”
Today is National Coming-Out Day (one day after President Obama promised yet again to repeal the “Don’t Ask Don’t Tell” policy and work toward fuller equality for all people, and yet again did nothing tangible about it).
I don’t have much to say about that, except to offer support and the wish that the homophobia that infects our society, among other lingering forms of discrimination and prejudice, will soon fade, and “coming out” can be the act of celebration and affirmation that it should be, rather than an act of courage and risk-taking in the face of dangers that should not be allowed to exist.
I’ll note, by way of parochial hyper-focus, that the pressures and threats that impede coming out and living openly in one’s chosen orientation have health consequences as well as many other harmful impacts; they cause stress and depression, create barriers to healthcare access, often result in abusive or discriminatory treatment in emergency care, and not infrequently result in violence. And of course the pervasive legal discrimination LGBTQ people face, in particular regarding health insurance, visitation and decision-making rights for gay couples, and barriers to assisted fertility and adoption, are also health and family-rearing issues as well as being rank discrimination in the basic sense.
Ending homophobia for reasons of good health is an odd and circumlocutory approach to the problem, but it’s one reason among many. Simple moral necessity is a better one. It’s long past time.
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 than 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.
The announcement yesterday that Elizabeth Blackburn has won the Nobel Prize in Physiology or Medicine was no surprise, but surely a much-deserved recognition. Her work on the function of telomerase was a breakthrough in molecular genetics, and she had long been among the informal class of Laureates-in-Waiting.
It cannot but bring to mind, however, the shameful episode in which Blackburn was hounded off the Bush-era President’s Council on Bioethics by its erratic right-wing chair Leon Kass. Blackburn was one of the few voices of sanity on that board (along with ethicist William May, also purged at the same time). She had distinguished herself by filing a “minority opinion” to the Council’s first official position paper; after that, minority opinions were no longer allowed, and eventually she and the other dissenter were replaced by pliable right-wingers (notable for their ravings about “ejecting God from the public square” and the coming wave of “forced abortions”). Kass himself, of course, is well-known for his flamboyantly idiosyncratic reactionism (he’s against, among other things, dating, virtually every form of reproductive technology including ones that don’t exist yet, and, infamously, eating ice cream cones in public*).
As Kass finally fades into his richly-deserved irrelevance, and even with the right-wing anti-science circus still in full cry, it’s refreshing to see one of science’s stars – and, for her forthrightness in the face of the intellectual debacle that was the Kass Council, one of its heroes – acknowledged for pursuit of the truth by means of reason and fact. Whatever distortions the right clings to, and whatever political means they use to deny science’s truths and withhold its benefits from those who choose to make use of them, truth is what it is and science reveals it. Blackburn, in a peculiar and distinctive way, exemplifies both the majesty of the search for truth and the dangers of its repression. Though her prize is based on the scientific importance of her work, her personal story gives it particular salience, and makes her success particularly triumphant, in these darkling times.
* Yes, really.
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