What got me onto this is that there’s just so much cool stuff in this post and the comments thread. I don’t have anything to say about the basic question of natural transitioning, but I want to point out several things that come up in the discussion.

First, it’s interesting that this post arose on a skeptic (i.e., atheist, anti-paranormal) site in the first place. Transexuality isn’t inherently an issue for skeptics, but the questioner identified as a skeptic and was apparently feeling vulnerable as both a transexual and a skeptic, so sought out a welcoming community. He found the right place: DebGod happens to be gender-queer, and is knowledgeable about transexuality and a former bodybuilder, and the community of readers was supportive. From some of the comments, it appears that many perceive the skeptical community as not uniformly welcoming for LGBTQ people – something I hadn’t known or expected. This post included some interesting discussion of LGBTQ issues among skeptics, and raises questions that – especially in light of the recent conflict over misogyny among skeptics (notably involving another prominent Skepchick poster) – I hope the skeptical community will take the opportunity to address.

More importantly, DebGod’s response is a model of careful and helpful analysis. She gives her own background, with appropriate disclaimers, then lays out the issues clearly and concisely. She notes red flags with the claims being made (no professional credentials, buzzwords, trademarked terminology, skeptical responses from people directly affected). She then reviews the suggested procedure, notes that it relies heavily on biochemical supplements, comments intelligently on their purity and efficacy, and discusses the vague distinction between “natural” and “non-natural” that the promoters take advantage of. She seeks information from a more knowledgeable source. Shen then concludes by running down all the issues this analysis raises, categorically, giving pros and cons for each and pointing out dangers. This is a really well-done, intelligent, well-argued analysis, at least as good as that commonly seen from Quackwatch or prominent skeptics like PZ Myers.

What I really like about DebGod’s analysis is that she is carefully value-neutral in all of this. Though it’s clear that there is much to be worried about in this suggested regimen, she never takes it on herself to make other people’s decisions for them. Her final statement is a clear and balanced sketch of the relationship between all the competing factors – health, personal goals, available support, and insurance or income – that influence a decision among the many different options for transitioning; she doesn’t declare any of them right or wrong for any individual, but makes it clear that each may be better or worse under different conditions. She includes just a single sentence offering her opinion that the “natural” process is too risky and low-benefit, but clearly identifies it as her own perspective and doesn’t insist that anyone else has to adopt it. She really gets her role as guide and analyst, as opposed to parent, judge, or dictator – something that so many culture-critic blowhards, and even many licensed professionals, can’t accept.

As she notes:

When it comes to gender identity and transsexualism, where you want to go, who you want to be, and how you want to do it is up to you, of course.

- a message that needs to be heard more widely, and not just regarding transexualism.

That leads to another issue that comes up obliquely, but importantly, in the comments. The medical community’s response to transexualism has been mixed, in ways that have generated a lot of resentment in the T/Q community even when the doctors and psychologists thought they were being helpful. For many years, transexuals seeking medical treatment in the US were commonly required to conform to the so-called “Harry Benjamin Standards of Care” (now the “World Professional Association for Transgender Health Standards of Care”), requiring extensive counseling and explicit authorization from multiple psychologists, and a set period of pre-treatment life in the transitioned gender, before professionals would agree to provide the requested treatment. Those standards have been eased but still exist. Many critics have pointed out that this is not only paternalistic but unnecessary – transexual patients have a higher level of success and satisfaction with their treatment than patients of many other conditions, including cosmetic procedures, that do not involve such heavy-handed gatekeeping. The professional societies – starting in the 1950s, when this work was extremely controversial – saw themselves as protecting patients and preventing harmful mistakes, while also going to lengths to provide treatments that more conservative caregivers would have prohibited in the first place. Patients, however, saw it as condescending, offensive, and wasteful of time and money. (Note that in other parts of the world, clinical standards for transexual therapy are much looser or non-existent; there is no known epidemic of regretful genderflippers.)

There are some very interesting comments from “natalie1984″ noting that the sex-reassignment gatekeeping system has been eroded in recent years, and along with it the stereotyped view of what it means to “really” be transexual or gender-dysphoric in the first place. Not only has therapy become more accessible, but what kind of therapy and what therapeutic endpoint the patient seeks have also been thrown open. As she notes: “Now we’re all able to simply work out for ourselves who we are and what we want from transition, and what will make us feel happiest”. She speaks with understanding of why many healthcare professionals are not current on T/Q issues, and simply encourages patients to find caregivers they are comfortable with. There’s also an interesting exchange further down the thread between her and one of the promoters of the natural therapy. She comes across as uncompromising but smart, thoughtful, and understanding.

There’s more, including the politics of gendered pronouns, but even just this adds up to a rich and complex discussion, with intersections between skepticism, healthcare autonomy, gender issues, and, vaguely, perhaps some philosophy-of-science stuff. What this post brings up for me is the deeply connected ways in which such issues always do surface in any similar debates over the proper application of facts to values – that is, the use of science or medicine to achieve chosen goals in human lives, and the conflicts that arise between those who control the science and those whose goals are at stake. It is common in ethics and philosophy of science to emphasize the “fact/value distinction”, but real cases often dredge up facts – and perceived facts – from many aspects of our lives, and competing values that arise from very different lived perspectives.

In this one issue, the skeptical community provides a useful mindset for analyzing clinical claims, but has also been charged with hostility to the LGBTQ community in whose interests those questions are asked. The “natural health” community offers the autonomy and self-direction that many patients want, but also harbors liars and scammers. The doctors who invented the sex-assignment gatekeeping system that so many transexual people hate did so as a way to make it possible for those patients to get care than had never previously been available. It is impossible for anyone to assert an exclusive claim to the moral or epistemological high ground here.

This stuff is hard, and, like so many progressive programs, requires a dedication to working through all the implications of a given position, and to striving to make one’s positions more defensible, more responsive, and more accepting. Every one of these communities – the skeptics, the healthcare professionals, the alternative-health promoters, and to some degree the LGBTQ population as well – have work to do in that way. Some of it has been done, though, and some of it is being done now, over at Skepchick. Good start.

The amendment is odd, though, and uglier even than it seems. It is so vaguely written that it is hard to figure out just how it would work if it were enacted, but its most likely interpretation would be literally deadly. It also extends the odious “conscience clause” for neglect of patients to every health plan, contract facility, professional group, doctor, nurse, or other staffmember at every medical school and teaching hospital in the nation, through a single sentence in this seemingly minor funding provision regarding training for one specific type of care.

The text of the amendment is here (scroll down). Recall this is an add-on to a larger bill; the parent bill seeks to defund all residency-level training in hospitals and medical schools nationwide, to force a new budget fight for training subsidies every year thereafter, rather than allowing block funding with less meddling. That bill by itself is part of the Republican assault on mainstream medicine – this proposed amendment is just a little anti-choice icing on the cake:

(d) Prohibition Against Abortion.–Section 340H of the Public Health Service Act (42 U.S.C. 256h) is amended by adding at the end the following new subsection:

“(k) Prohibition Against Abortion.–

“(1) None of the funds made available pursuant to subsection (g) shall be used to provide any abortion or training in the provision of abortions.

“(2) Paragraph (1) shall not apply to an abortion–

“(A) if the pregnancy is the result of an act of rape or incest; or

“(B) in the case where a woman suffers from a physical disorder, physical injury, or physical illness, that would, as certified by a physician, place the woman in danger of death unless an abortion is performed including a life endangering physical condition caused by or arising from the pregnancy itself.

“(3) None of the funds made available pursuant to subsection (g) may be provided to a qualified teaching health center if such center subjects any institutional or individual health care entity to discrimination on the basis that the health care entity does not provide, pay for, provide coverage of, or refer for abortions.

“(4) In this subsection, the term `health care entity’ includes an individual physician or other health care professional, a hospital, a provider-sponsored organization, a health maintenance organization, a health insurance plan, or any other kind of health care facility, organization, or plan.”

The Meaning – Such As It Is – of the Amendment

The amendment is so badly worded that it’s not clear what it actually does. Section (k)(1) – the central defunding provision – prohibits any residency training money from being “used to provide any abortion or training in the provision of abortion”, but this is far from self-explanatory.

The first part is confused: the funding in question (defined by the parent bill, HR1216, which addresses “funding for graduate medical education in qualified teaching health centers”)  is for post-graduate medical education (i.e., medical residency programs or the equivalent), not actual clinical care, and the infamous “Hyde Amendment” prohibits federal money for abortion care in the first place, so the “provide any abortion” provision here would seem to be superfluous at best.

The real issue – and the way the amendment has been packaged – is the denial of funding to train residents in abortion techniques, with an eye toward making abortion unobtainable by flooding the country with surgeons and OB-GYNs who are simply incompetent to provide this standard care. Since almost all residency training takes place in facilities receiving federal subsidies, this provision, if enacted, would mean the coming generations of doctors would receive no training at all in central aspects of women’s healthcare. (It might be possible to obtain such training at the resident’s own expense, but it’s not clear where that would even be possible, since this amendment would restrict almost all centers even capable of providing the training regardless of who paid for it. The only realistic alternative would be to go overseas – again, at the doctor’s own expense – and even that would not necessarily be availing, because it raises licensing questions and is not a practical option for all residents, even the ones who were willing to go to such lengths.) This is not a new tactic on the anti-choice right wing; at one point, Georgetown University’s Medical Center attempted to ban its GYN residents from obtaining abortion training anywhere, even on their own outside the program – and this when such training was still funded. But making it mandatory, inescapable, and nation-wide, is a step never before taken.

But it also seems that much of the intended impact of the amendment could be escapable. Here, the strange wording of the amendment provides a paradoxical loophole. Section (k)(2) allows exceptions for “an abortion . . . ” involving the usual grudging set of special horrors (rape, incest, death*) that some of the right wing are willing to overlook. But, again, notwithstanding the wording of the amendment, there is no funding addressed by this amendment or its parent bill that would “provide an abortion” under such conditions, since it does not provide funding for clinical care in the first place. So these exemptions for “an abortion”, if they do anything at all, must modify the prohibition on “training in the provision of abortions” – that is, Section (k)(2) apparently grants exemptions for federal funding for “training in the provision of an abortion . . .” in pregnancies involving rape, incest, or the threat of death. But of course all techniques used in abortion may be used in cases involving these exempted situations – so presumably federally-funded health centers can provide any kind of appropriate “training in the provision of abortions” for pregnancies involving rape, incest, or the threat of death - after which it’s the doctors’ own concern how they actually put that training to use!

At least, that’s how it reads, in strict logical terms. That may not be how it would be implemented, however. It’s clear from the legislative history of the amendment – the discussion on the floor before it was voted on – that, regardless of the grammatical deficiencies of its author, it was in fact intended to prohibit all training in abortion techniques.† Probably the courts would interpret it that way, even if that’s not what it says. So in practice the impact of the amendment is (a) to prohibit (with few exceptions) all abortions provided using medical-residency training funds – a category which does not exist, and (b) to prohibit all training in all methods of abortion regardless of likely application.

Scope of Ban

The result of all this, as noted, would be to permanently exclude competency in certain standard professional practices from the skill set of all US-trained physicians in all specialties, even including surgery, obstetrics, and gynecology. The skills in question, it should be noted, would almost certainly include, among others, the following methods most commonly used in pregnancy termination:

• uterine vacuum aspiration
• dilation & evacuation
• dilation & currettage
• intact dilation & evacuation

However, every one of those techniques is used for purposes other than abortion (most commonly, to remove dead tissue left by menstrual troubles, fetal death or an incomplete miscarriage). As noted above, the strict text of the amendment allows training in “abortion” techniques if it is not intended to facilitate abortion, but that’s obviously not what the author hoped for, so presumably it must be interpreted to include any technique that could be used in abortion, regardless of its common application. That would also include:

• cervical dilation (used as part of many gynecological procedures including abortion, but not abortive in itself)
• menstrual extraction (used to evacuate menstrual tissue after heavy menses, and also for early abortion)
• hysterotomy (used to access the uterus through the abdomen, used for late-term abortion but also for in-situ fetal surgery and non-abortion-related surgery)
• induction of labor (used to expel a fetus in late-term abortion, and ubiquitous in normal delivery or the removal of a miscarried fetus)
• hysteroscopy (an examination and treatment technique used in many conditions of the uterus, only sometimes for abortion)
• and more . . .‡

Impact of Ban

What would it mean if doctors were banned from all training in those techniques, for all purposes? Well, among much other harm, it would mean that any woman would face almost certain death from any of the following conditions, for which one the above techniques is the standard treatment:

• infection from retained products of conception
• hemorrhage or infection after incomplete miscarriage
• hemorrhage or maternal exhaustion after failed labor
• virtually any other condition that requires emptying the uterus, at any time just before or after fertilization of an egg or during any actual or failed pregnancy

It would also mean that women would have no access to standard or best practices under any of the following conditions, among others, because those treatments involve techniques that could be used in abortion:

• persistent menses or dysmenorrhea
• uterine fibroids and other endometrial malformations
• removal of retained products of conception
• cervical dilation for any purpose
• uterine aspiration for biopsy
• any other condition requiring dilation of the cervix, aspiration currettage of the uterine contents, or open surgical procedures on the uterus

And of course there’s the whole conspiracy-of-silence-about-birth-control thing (see ‡ below).

In short, this ban – if it were enacted and if it were implemented as intended, and as anticipated by its legislative history – would kill even more women in the US, in coming years, than are currently sacrificed every year from the current lack of abortion providers. We would see a return to death from emergencies in childbirth – even for women not seeking elective abortion – at levels equivalent to that in some Third-World countries (since, given that appropriate care would be banned under this amendment, women facing certain labor-related emergencies would essentially be getting Third-World care even though best-practices-level care could have been provided). Many more would suffer, some greatly, from the lack of access to perfectly ordinary and preferred treatments for conditions having nothing to do with abortion. By making it illegal for physicians in training to obtain the necessary skills to treat a wide range of common gynecological conditions, some of them life-threatening, this amendment simply condemns their future patients to death, permanent disability, and other suffering from conditions for which safe and effective treatments were available, and which are universally practiced in every other advanced nation, but which their US-trained doctors were prohibited from learning.

[NB: I am not a clinician. The information above is common knowledge from widely-available sources. I am confident it is accurate; it is likely incomplete - the full impact of this legislation is likely worse than I have been able to describe. For actual clinical guidance or practical healthcare purposes, be sure to consult a knowledgeable clinician who has a full range of professional skills (i.e., one who was trained at a non-misogynistic healthcare center before this ban was enacted).]

Comments

As with so much of Republican “healthcare”, it’s hard to imagine this policy could ever be taken seriously, or enacted in any nation that makes a claim to basic decency. But as so often has been the case in the past, it’s best to be prepared to be surprised by what levels of indecency Republicans are willing to reach.

As I noted, the amendment contains inherent loopholes that its legislative history makes clear were unintentional. It may be possible to circumvent some of its provisions nonetheless, by sequestering training in the relevant techniques to programs ostensibly aimed at other conditions: that is, teach vacuum aspiration as a treatment for dysmenorrhea, teach dilation and extraction as a procedure for removal of a dead fetus after incomplete miscarriage, etc. This could work, but only if the ban were confined to overt training in abortion as such, and not to training in any procedure that could be used for abortion. There is no question how vicious, and how hostile to the lives of women seeking abortion, the supporters of this bill are; it remains to be seen if they are willing to sacrifice innocent breeders, too, in their pursuit of death for rebellious hussies. Virginia Foxx, the sponsor of this amendment, is known for her bizarre and incoherent beliefs; I think it is really likely she just does not understand the implications of her own amendment, and it would not in the end be taken to the extreme of a complete ban on all gynecological surgical methods. Or would it?

At any rate, the stupid and ugly thing is not going to pass. But it is worth considering just how serious its sponsors were, and how far they were willing to go, to kill and punish women who sought control of their reproductive organs, through the medium of their own doctors – how far they were willing to go to make the ignorance that characterizes Republican health and science policy across the board in fact mandatory for those who refuse to adopt their values voluntarily. As in so many cases, denial of knowledge is both the substance of, and a weapon for imposing, the right wing’s values as punishment upon those whose crimes are knowledge and independence.

* Note that only death – not merely unendurable pain, permanent disability, or traumatic stress – is grounds for exemption. And, too, the section on the woman’s health repeats the phrases “physical disorder . . . physical injury . . . etc.” four times, making it clear that there is to be no sympathy extended to women whose traumas are psychological, whether or not life-threatening, because that’s not part of your “physical” health. Apparently the people who are convinced there is such a thing as a soul are not convinced there is such a thing as a mind.

† This raises another issue: the technique for “provision of abortions” in the case of medical abortions – RU486 or similar medications – is simply to conduct an appropriate examination and write a prescription. The “techniques” for doing so are used in the treatment of every condition, and the specialized knowledge involved in using this particular medication is trivial to acquire independently. So, again by the strict logical meaning of the text, either hospitals are prohibited from teaching residents even to write prescriptions – unless they argue that techniques that merely could be, but are not intended to be, applied to abortions prohibited by this amendment are therefore not prohibited in their non-abortion contexts. And that – again, if logical consistency means anything – would authorize all abortion techniques, medical or surgical, for the reasons I explained in the preceding paragraph. But these are Republicans we’re talking about.

‡ And of course the anti-choice nuts characteristically go so far as to define mere fertilization as a “pregnancy”, and I have no doubt that the supporters of this amendment would argue that its provisions apply not merely to the prescription of abortion by medication, but also to post-coital medical contraception such as Plan B. But . . . Plan B and its like are essentially equivalent to nothing more than high doses of ordinary prescription birth control, and in fact ordinary birth control pills can be used for that purpose without a separate prescription. So presumably this amendment would also prohibit either training in prescription of oral contraceptives, or at least mentioning the fact that they can be used for morning-after contraception. So far does the absurdity extend, if you take this policy seriously.

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.

Quelle horreur!

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.

The consequences:

At least two patients in the study died shortly after receiving the fluid and more than two dozen others required transfusions, according to documents submitted to the federal government by the hospital and obtained by the Huffington Post Investigative Fund.

There were attempts to rein in the problem as it developed:

In November 2000, two Columbia anesthesiologists – Marc Dickstein and Mark Heath- sought out the head of the institutional review board, Paul Papagni, a lawyer. They told Papagni that they had been in the operating room when a number of patients had hemorrhaged. They feared the study’s design virtually guaranteed that there would be more who would suffer hemorrhaging

However, their objections were derailed by internal politics. Columbia did later act decisively to crack down on the lead investigator, Dr. Elliott Bennett-Guerrero and report the breaches of protocol to the HHS, but they also downplayed the severity of the consequences, in part by reporting only a narrow range of outcomes from selected patients, not including the most severe adverse outcome, the bleeding that was the most important known side effect. The hospital also ignored advice from the HHS that it contact patients from the study and apprise them of the truth. Dr. Bennett-Guerrero has now been dismissed from the hospital (he landed in a Directorship and medical-school professorship at Duke – guess they’re OK with all this). Columbia has now been ordered by HHS to contact its former patients.

So, all in all, a serious problem plagued by misbehavior at every level, and an apparent partial coverup.

That’s all very worrisome, but it is the investigator’s attempted defense that particularly caught my attention:

Bennett-Guerrero . . . said in e-mails: “It is hard to imagine that an unbiased expert in cardiac surgery clinical trials could conclude that subjects were harmed in this study, since with only 50 patients per group the study was not designed or powered to prove any differences in major complications including death.”

What he’s saying is that because the sample size was so small, the statistical error in the results is necessarily mathematically too large to be able to show that the deaths or other events that resulted are clearly more numerous that would be expected by chance in such a group of patients.

There are a couple of real problems with this.

First, with a sample size of 50 and, as the article notes, varying dosages of the expander given, up to “three times the level recommended by the manufacturers”, this appears to have been a Phase I Ascending Dose trial. Phase I trials are conducted expressly for the purpose of monitoring safety and adverse side effects of the experimental treatment – they are intended to weed out unsafe treatments before they are tried on large groups of patients. In such trials, safety monitoring is paramount; the first sign of harm to patients should bring the trial to a halt. It’s true that such trial sizes are often too small for statistical significance, but the whole point is to gain confidence before exposing a larger sample size – so empirical monitoring is vital. In this trial, two patients died and numerous others suffered serious hemorrhaging – severe-enough outcomes that experienced clinicians complained directly to the IRB – but the lead investigator never reported a problem or stopped the trial.

(It is possible this was a Phase II or combined Phase I/II trial – though again the facts still seem to suggest Phase I. But if so, the sample size should have been large enough to be likely to return statistically significant results. The trial would be worthless without them.)

Another concern is that no early-Phase trial is supposed to be conducted on patients receiving conventional therapy or in lieu of conventional therapy, where such therapy exists. They are conducted on healthy volunteers. Partly this is to ensure that participation is truly voluntary (i.e., that patients are not being enticed into trials because they see it as a requirement for receiving other therapy), partly precisely to avoid this problem of contaminating apparent adverse consequences of the experiment with the patients’ underlying pathologies.

So it is difficult to see how this trial could have been appropriately designed, aside from the question of informed consent. Either it was a safety trial conducted on patients whose health was already compromised to the point that adverse effects could not be identified as the results of the experimental medication, or it was a dosage-efficacy trial conducted on a sample size too small to provide reliable results, either positive or negative. And in either case, clinical judgment seems to have been dispensed with as patients died but – because of the built-in lack of confirmatory mathematics – no suspicion was entertained about a possible link to the experiment they were participating in.

That raises questions of the investigator’s intent. At this point, I want to step away from this particular incident, and make it clear I am not making insinuations about Dr. Bennett-Guerrero or others from the Columbia trial. Clearly things went badly there but I don’t know what was going through his mind or what his intentions were. I want to use this situation to illustrate ways in which clinical trial design can be (again, I am saying nothing about this particular case) manipulated to  evade ethical protections for subjects.

If a trial is deliberately designed with a sample size too small to return significant results, then by definition no negative results can ever be discerned (nor can any positive results, either, of course). At the Phase I level, where harm is the only reported result, lack of positive results is not a problem, but the impossibility of negative results means that the candidate drug will automatically pass the screening. (Since you can’t find any statistically significant negative results, there will be no statistically significant negative results to report, thus the drug can never be proven to have failed the test. And since, at Phase I, “not failing” is a good-enough result to justify further research, the lack of a robust experimental design can, paradoxically, be a very useful feature.) With a lax IRB focusing only on the mechanics of the informed consent procedure, and not the possible pathways for harm or the mathematical intricacies of the results testing, one can easily get permission to conduct a “drug test” that no drug can possibly fail.

Doing so, of course, requires that you suspend judgment as to the empirical/clinical course demonstrated by the subjects. With no mathematical test for success/failure, an ethical researcher must rely on careful clinical monitoring to detect problems with individual patients or the trial as a whole. Starting with healthy subjects makes such problems obvious, since they aren’t supposed to die at all, but conducting the trial on subjects already sick (or, in fact, pulled directly out of the ER into heart surgery) creates a ready explanation why some of them may die, if in fact they do. So, again, there is an incentive to conduct the trial in what would otherwise be a scientifically invalid manner, essentially building in negative outcomes from the beginning (if the patients already have life-threatening illnesses, you’re going to get some bad outcomes no matter what) as a screen for the negative outcomes that may arise from the experimental procedure. This makes it difficult to honestly answer the question whether the procedure harmed the subjects, but makes it easy to argue that it did not provably harm them.

Thus, for an unscrupulous researcher (and again, this part of the discussion is hypothetical; it is not aimed at a particular individual), it may be possible to design a trial that cannot deliver honest and reliable results, but which also cannot fail to provide the preferred result from the point of view of a drug manufacturer or funding source. Doing so requires conducting a trial that is both scientifically non-decisive by intention and which lacks the ability to identify clear harms to subjects. It may also require deliberately enticing patients into the trial for whom better and safer therapies are available, precisely to use their pathologies as a ready excuse for adverse clinical outcomes which the trial may produce in them. And, it necessarily requires vacating the professional obligation to use vigilance and judgment to monitor and protect patients in all circumstances, and especially the experimental environment – and to instead rationalize patients’ outcomes away in order to avoid public knowledge, and possibly self-knowledge, of the harms inflicted upon them.

Convenient rationalizations are not an acceptable mindset for those who take vulnerable others into their care. The fact that a trial design cannot determine whether its subjects have been harmed is not an acceptable exculpation of those whose obligation was to watch for, detect, and ameliorate such harms. It is a reason why such trials must not be conducted in the first place.

What you think of his policy depends on what you think of the moral status of embryos. If (as modern biology informs us) conception initiates a human life, and if (as the Declaration of Independence asserts) every human life is equally deserving of some minimal protections, government support for the destruction of human embryos for research raises profound moral problems. But if you think an embryo is not quite a person, or that its immaturity or inability to suffer pain or its other qualities mean that destroying an embryo does not amount to taking a life, the promise of stem cell science might well outweigh any doubts.

I hope at least some of the lameness of this nonsense is apparent to all, but I recognize that it involves issues and terms that are somewhat restricted in usage. Here is my response, as buried deep in the comments section of the WaPo‘s online edition:

Yuval Levin’s remarks on the morality of stem-cell research policy are simply incompetent.

He is correct that much hangs on the moral status of the embryo. He then makes basic factual and logical errors – ones characteristic of the right wing – in saying:

“If . . . conception initiates a human life, and if (as the Declaration of Independence asserts) every human life is equally deserving of some minimal protections, . . . [this] research raises profound moral problems. But if you think an embryo is not quite a person, or that its immaturity or inability to suffer pain or its other qualities mean that destroying an embryo does not amount to taking a life, the promise of stem cell science might well outweigh any doubts.”

It is difficult to count all the errors in that short statement.

Most importantly, he contrasts “a human life” with “a person” – but the first describes biological status (human embryos, as right wing “ethicists” tediously remind us, are indeed human), and the second describes moral status (not everything human has moral standing; “persons” are members of the moral community, but human embryos, fetuses, and brain-dead vegetative bodies, to name just a few types of human beings, are not generally regarded as persons).

Levin implies these are identical categories – if an embryo is a “human life” then it must be a “person”, or those who believe it is not a “person” are contradicted if they believe it is also a “human life”. But this is a simple logical error – the two terms pick out utterly distinct qualities, and virtually no one but religious dogmatists believes the categories are even coextensive, let alone identical.

Note also that the category Levin defends – biological “life” – is the one that does not imply moral status.

To anyone who did not follow the travails of Bush’s President’s Council on Bioethics, the idea that its former staff director could indulge in thinking this bad must be shocking. Sadly, it is all too characteristic of the work of that body.

He also posits a straw-opponent argument so bizarre he must have made it up, since no serious proponent of stem-cell research has made it: the claim that an embryo’s “immaturity or inability to suffer pain or [similar] qualities mean that destroying [it] does not amount to taking a life” is, of course, false, but utterly irrelevant to any moral question, and is one that no one defending stem cell research would think of making. Of course destructive research on embryos involves “taking the life” of that embryo (another biological fact), but, because the embryo is not a moral person, it does not involving killing a person (a moral issue). And of course qualities such as suffering, self-awareness, and the development of other moral capacities are part of the definition of personhood, but not of the definition of “a life”. No ethicist is confused by these distinctions. That Levin jumbles them into a mythical argument he imagines his opponents making proves only that he does not understand the most basic terms defining this issue, or that he uses them dishonestly.

Minor errors: the Declaration of Independence does not say that “every human life is equally deserving of some minimal protections”. It says, quite explicitly, that “all men” are endowed with certain “unalienable rights”, specifically including “life, liberty, and the pursuit of happiness”. It is quite a puzzle what is meant by “all men”, since many sub-categories of human persons were not, at the time of the signing of the Declaration, accorded full human rights. Historically, the inclusion of some of those excluded categories, blacks and women particularly, as “men” hinged on recognition of their personhood – that they had feelings and capacities equal to those of white men; there was never any confusion as to whether they had “a life”. Note also that abortion was generally legal in England and the US at the time the Declaration was written, though the killing of “men” was not. Levin is not merely wrong on the simple fact of the actual words used in the Declaration (the phrase “human life” appears nowhere at all in the document), but their meaning as well.

The Declaration also does not posit “minimal” (or other) degrees of rights. It is categorical: certain beings have certain specific rights. It is a very great stretch to assert that blastulas or embryos are such beings.

The decision whether stem cell research is allowable is also categorical: it is not a question of “promised” benefits “outweighing” “doubts” about beings who are “not quite” persons. Embryos either are or are not persons, which is a factual question. It hinges, as Levin notes, on a value question – but about the qualities defining personhood, not, as he claims, about biological category membership.

In short, Levin’s entire discussion of this issue proceeds from such gross, possibly deliberate, confusion and falsehoods it cannot be regarded as a serious contribution, still less in any way convincing.

He goes on to castigate Obama for stating that science policy would be based on”science, not ideology”. He is technically correct in saying there is a preliminary question whether the subjects of this research are moral persons on whom such research should not be conducted, in the same way that that question could, conceivably, be asked of any research subject, including rocks or atoms. But it is only to religious wingers like himself (and, more notably, Leon Kass and most of the rest of the former membership of Bush’s Council) that the moral status of an in vitro embryo even arises as a question. To virtually everyone who understands the issue – and make no mistake, the kind of slovenly mental ill-discipline that Levin brings to it is absolutely characteristic of the right wing, all the way up to and including the level of hand-picked Presidential advisors – there is no meaningful question of that kind.

Obama’s policy eschews ideology in authorizing research on embryos, since only an extremist and intrusive ideology upholds the moral status of the embryo – let alone embryos residing in laboratory apparatus with no possibility of development into a human person in the first place – as being a relevant consideration. Levin, the PCB, and their ilk are welcome to get all het up about whatever weird obsessions define their moral universe, but they’re not entitled to demand than anyone else take it seriously, let alone that an entire nation stop doing anything they personally don’t happen to approve of. As to moral questions about in vitro embryos, there is no fact-based argument, grounded on any value positions other than mere whim or dogma, that cannot be, and has not already been, dealt with decisively and easily. The ideology that has characterized this made-up debate has long been laid to rest; it’s past time for the science to proceed.

UPDATE: Somehow I didn’t even notice the title of Levin’s stupid piece: “Science Over All” – a not-subtle invocation of the phrase “Über Alles” that characterized Nazi-era Germany’s racial and geographic hegemony which included famous medical atrocities. Because embryonic stem cells in a laboratory flask are just like Jews at Buchenwald. Christ, these assholes make me tired.

Crossposted from Lean Left, the general-issues blog I contribute to.

I’m interested in the issues surrounding animal testing. I’m certainly not a member of the PETA crowd or anything, but at the same time, I’d certainly think we should keep such testing to a minimum, using it only where it’s necessary, useful, and relevant. But I honestly don’t know what all the issues are.

Thanks for the first-ever “Ask the Ethicist” blog post!

And now, what about animal testing? Just to get the ball rolling, here are some relevant issues:

1. What makes using animals in labs worthwhile?

Animals are generally used for lab tests for several reasons: first, much basic biological research concerns animal biology, for which the relevant animals are obviously the best model, and it is possible to study animal subjects in the lab without endangering the wild population of the same animal; in the case of research relevant to humans, animals may still be preferred because statistical analysis requires large sample sizes, which are easier and cheaper to achieve with, say, gerbils than with humans; testing may be invasive, painful, dangerous, or fatal, which again is more convenient with animal models than with humans, unless you’re running a Nazi concentration camp or a US prison; animals can be subjected to experimental regimens, including drugs, with unknown safety or side effects; animals can be used for inevitably fatal or harmful procedures such as the development of new surgical techniques or the deliberate creation of wounds or diseases for the testing of treatments; animal models can be biologically or genetically tailored to the specific research protocol to produce a uniform test sample; animals can be reproduced in the lab to increase the population with a rare condition, making it easier to test; animals are simply easier to control and don’t inject their personalities into the test procedure.

These benefits are predicated upon two assumptions: that animals are good models, biologically, psychologically, or sociologically, for humans, and that it is permissible to do things to animals that would not be permissible in humans. If both those assumptions are true, then animal testing obviously brings great benefits. Any treatment or procedure that is not tested on animals will have to be tested on humans alone, without preliminary indications that it is safe. If the assumption that animals are good biological models for humans is not true, that undermines the value of such testing and hence its moral justification. If the assumption that it is permissible to harm animals in certain ways is not true, that would prohibit types of research involving that harm, even if it were to be beneficial to humans.

2. What problems are there in using animals in labs?

An important problem is that the animals may not always be good models for humans after all; the literature is filled with examples of drugs that passed safety and efficacy testing in animals and were useless or dangerous in humans, and there are other examples of drugs that are safe in humans but dangerous in animals, and still other cases where drugs were safe in some animals but not in others, making the question of human modelling ambiguous. This is why animal testing is a preliminary step in development of human treatments, but human testing is still required. Some have suggested that this means animal testing can be done away with entirely, since it does not definitively prove a treatment will or won’t work, and does not prevent exposing humans to uncertainty anyway.

Aside from that practical issue, the moral assumption mentioned above is the focus of this discussion. Obviously, to the extent that it’s an open question whether animal tests are morally permissible, those tests are problematic – they may be a source of moral harm (to the animals), not a means of avoiding it (for humans).

3. What controversies arise in considering moral criticisms of such use?

Is it true that it is morally permissible to use animals for procedures that it would be immoral to perform on humans? That is, do animals have some lesser claim on moral protection than humans do? Do they have no moral claims at all?

How do we determine which moral claims take priority, and how does species identity enter into that issue? Why do we accord animals any moral claims at all (such as a right not to be mistreated), and why do we not accord them the same moral claims as humans? What standard do we use to determine such questions, and why that one?

4. What are some relevant moral issues underlying these arguments?

Leaving practical considerations aside, the question at the center of this topic rests on the issue of moral standing: what entities have moral interests, or a claim to moral consideration, and why? How do we mediate conflicts between entities that each have some certain level of moral standing?

There are simplistic moral arguments favoring animals, based on assertions of religious, emotional, or otherwise idiosyncratic personal values – that is, some people simply feel an affinity for animals, hold religious beliefs prohibiting harm to animals, or somehow feel that animals are “citizens of the earth” or “living creatures” and that that fact confers moral status sufficient to prohibit harmful treatment. Others assert a moral value to the natural world, such that it is immoral to destroy part of the natural environment because of its inherent moral worth (rather than because it is useful, or valuable, or necessary for life). The problem, of course, is that these are non-starters for anyone who happens to hold different beliefs or values – and therefore non-starters as policy because our policies cannot be parochial or arbitrary and carry compulsory moral force.

Thus, the assertion of animal interests generally follows some analysis of the moral status of animals that makes harming them a morally significant act.

That can be an argument to the effect that animals are moral persons with equal claim to moral interests, compared to humans. Jeremy Bentham argued that this was an inevitable consequence of utilitarian morality over 100 years ago, and Peter Springer has resurrected that line of reasoning in a way that has been influential in the current animal-rights movement. To make this argument, you have to define the threshhold for personhood fairly leniently. For Bentham, it was merely the capacity to experience pain. (“The question is not, Can they reason? nor, Can they talk? but, Can they suffer?”) From this perspective, any creature that can consciously experience pain is a full moral person, whether or not they have any other mental functions – so birds, fish, and of course all mammals are morally equal. This is why Singer promotes vegetarianism, and why some animal-rights advocates are against pet ownership as a form of slavery.

You can also argue that animals have lesser moral status than humans, but are still due some degree of moral consideration. On this ground, it might be permissible to use animals in some ways that did not cause suffering, but perhaps not to kill them, or to do so only when a comparable benefit to humans was expected. This argument would be grounded on a definition of personhood that required capacities beyond those of most animals – for instance, the possession of a unique sense of self-identity, or perhaps some kind of higher reasoning function. If animals have some, but lesser, moral status, then at the least we must alter our animal-handling practices to ensure that they are not excessively cruel, and perhaps we might have to cut out some practices as well – but a wide variety of common behaviors toward animals would still be tolerated, possibly including farming or killing them, or conducting research on them, under specific guidelines.

Finally, you can argue that animals are not moral persons and are thus due no moral consideration at all – they can be treated as if they were inanimate objects, such that the only considerations against using or killing them would be practical ones (maintaining species diversity, stabilizing the food chain, etc.). One might also work in some sort of protections against cruelty or gratuitous pain infliction, on grounds of a general duty not to be cruel, or for moral training purposes (avoiding developing bad habits), but not on the basis of the animal’s moral interests itself. Given this perspective, almost any animal-treatment practices that are not gratuitously cruel – including raising them for food or commercial exploitation, or even conducting relatively frivolous research on them – would be allowed, since there are no countervailing interests on the part of the animals to stand against them.

Note, though, that if we do not take the extreme abolitionist position, then whatever view of animals that we do take will impose at least some limits on our behavior. If we think animals have limited moral claims, there will still be some things we cannot do to them, but, since they stand at a lesser moral plane than humans, there will always be some things we can do to them. How far those limits go in either direction is open for debate, but most people in this position would agree, for instance, that it is wrong to torture animals for fun, but not wrong to use them in medicine to save human lives. Narrowing down those extremes is what the continuing debate is about (if not torture, what about forcing them to perform under stress in rodeos?; what about performing under less stress in circuses?; what about being owned as pets?; if medical uses of animals are allowed, what about medical research?; what about cosmetics research?). Even if we hold that animals have no moral claims per se, respect for suffering as suffering ought to impose at least some check on what we can do to animals capable of experiencing pain.

So, the debate over animals incorporates the debate over the proper definition of moral personhood. It also rests heavily on empirical questions about the degree to which they can feel pain, the degree to which they exhibit emotions or consciousness, and our interpretation of their various behaviors in that regard. This debate thus parallels, and both influences and is influenced by, identical debates taking place regarding humans in the context of abortion, stem-cell research, the treatment of newborns, and end-of-life treatment. It has unique elements, too, in that animal personhood must obviously be of a different type from human personhood, and convey different privileges even if that personhood is recognized (i.e., saying that animals have moral interests does not require saying that they should be able to vote, enter contracts, marry human beings, etc.; conversely, saying that they should not or cannot do those things does not by itself imply that they are not persons).

Species is an important issue in animal-rights debates, too. Animal-rights advocates often accuse opponents of “speciesism”, meaning making arbitrary moral distinctions between living things on the basis of their membership in one or another species. However, it is seemingly impossible to articulate an argument that establishes equal moral personhood for all living things, or even just all animals, without any discrimination between species whatsoever, especially given the huge number of invertebrate or microscopic species that very obviously possess no conception of the moral life; taking that position seriously would also lead to absurdities such as claiming that it is morally wrong for obligate carnivores to eat prey. So, we must make distinctions on grounds of moral personhood, and since species identity more or less determines moral capacity, as a baseline at least, those distinctions are going to include or exclude entire species, possibly with the exception of a few borderline cases where the evidence is more ambiguous. Thus, most animal-rights activists wind up drawing a line somewhere, allowing that it is permissible to make use of species with lesser mental capacity than those at the borderline, but that there are limits regarding species with greater capacities. Many attempt to draw this line to include some ape species; some go farther to include a larger range of mammals; Singer famously draws it provisionally somewhere among the Molluscs.

5. If we are not extreme abolitionists on animal-rights issues, how do we decide what kinds of treatment are justified and which are not?

It must be recognized that the different things we do to animals have different types and degrees of consequences, and also that the different benefits we derive from our treatment of animals are likewise of differing kinds and degrees of significance. The greater the human benefit derived, the greater justification there is for the process of obtaining that benefit; the more harmful the treatment required to obtain it, however, the less justified it is. The general approach to such situations is a “balancing” test of degree of harm vs. degree of benefit.

For this reason, much animal-rights activism has – reasonably enough – focused on particularly egregious harms to animals in pursuit of seemingly trivial benefits to humans: for instance, hunting rare species only for luxury products or gourmet foods; the cruel confinement of veal calves only to produce tender meat; or the use of irritating or deadly chemicals on animals to test cosmetics or soaps. But we do not have a system for establishing absolute degrees of harm or benefit (how bad is it to be immobilized in a pen or cage? how good is it to eat plump chickens or tasty veal?), so we cannot say with authority exactly when the balance of harms and benefits tips in different cases.

Notice, in this discussion, that there is no clear moral distinction between the use of animals in medical testing and their use in other ways – and so I have broadened your question to include all forms of use of animals. The “balancing” approach described above merely asks how much benefit – not of what kind, and likewise how much harm – not why it is inflicted. To most moral philosophers, there is nothing inherently “better” about research to save lives than research to invent cosmetics, except that the one outcome is obviously more significant in the lives of, and more highly valued by, the people benefiting; similar remarks apply to the different kinds of harms inflicted upon animals. Because medical care is so important, medical research on animals is most likely easier to justify than less-vital uses of them, but only for that reason. There may be medical treatments whose benefits do not justify the toll taken on animals to develop them (in light of the fact that most candidate drugs or procedures do not successfully emerge from development, and the few that do still require extensive human testing, it may be that almost no new medical discoveries truly justify the many thousands of animal deaths required to produce them – if we place a sufficiently high value on animal suffering). Then again, there may be less-important non-medical benefits that are justified, if the role of animals in producing them was minimal enough. So, in considering “testing”, we have to remind ourselves that animal use involves much more than the development of new and important medical procedures; it involves a vast amount of unsuccessful medical research and even more non-clinical basic-science research, developmental testing of consumer products (most of which are not exactly in the cure-for-cancer category), and the use of animals to test products and procedures for the farming or treatment of animals themselves. In addition, there are non-testing uses of animals such as for the production of industrial products and materials, hunting, entertainment, and pet-keeping, and the vast animal-based food industry, that must be taken into account.

These remarks may help outline the scope of the problem. You’ll notice no answers are given! But thanks for a great and timely question. The ball is now in the readers’ court!

Resources:

Animal Liberation, by Peter Singer
The theoretical Bible, and foundational text, of the animal-rights movement.

Animal Rights: Current Debates and New Directions, by Cass Sunstein and Martha Nussbaum
A new treatise by two well-respected academics.

Should Trees Have Standing? And Other Essays on Law, Morals, and the Environment, by Christopher Stone
The issue of moral and legal rights for non-person entities, from a legal perspective.

The Omnivore’s Dilemma: A Natural History of Four Meals, by Michael Pollan
A review of the entire US food-production industry, including problems with animal-based foods.

“Animal Rights“, “Animal Welfare” and “Animal Liberation Movement“, Wikipedia
Decent surveys of the distinct concepts and their histories, with lots of links and references.

“Animal Rights: An E-mail Debate between Peter Singer and Richard Posner“, at Slate
An epistolary debate between Singer and a well-known conservative US Federal judge.

But that can take many forms, one of which is mocking, in appropriately childish fashion, PETA’s own tactic for pressuring corporate chicken-torturers [sic]. They have a Web sign-generator site in which they encourage people to post comments about Kentucky Fried Chicken’s practice of, as they put it “tortur[ing] chickens for profit”. Whatever the hell that’s about, it interests me far less than the fact that PETA, as a group, is offensive and abusive to real people, whom I care about far more than the animal fetish-objects that are their sole obsession. So if we’re going to make little signs about cruelty and inappropriate moral priorities, well, let’s get our inappropriate priorities straight, first:

Make your own!

As most people will be aware, the right wing has been Swift-boating Barack Obama for the past few weeks over controversial statements made at various times over several decades by the pastor of the black-identified Baptist church Obama attends in Chicago. Yeserday Obama responded with a speech on the history and role of race and racial discrimination in America – a speech that will stand within the highest ranks of American political oratory, and, I am convinced, be seen in the future as the watershed moment in race relations in this country (certainly so if Obama wins the presidency; likely so even if he does not). There is almost nothing in the speech about healthcare, and only a little about the particular statements of the Rev. Jeremiah Wright that the right wing has picked out to whip up into controversy. Rightly, Obama placed the entire controversy in the larger context of racial history; many conservative commentators, angry at seeing their manufactured controversy dismissed in favor of more important and more substantive issues, responded with criticisms that Obama did not explicitly repudiate Wright and specific statements he had made, as they had demanded. Michael Gerson, in particular, focuses on Wright’s endorsement of the far-fetched conspiracy theory about AIDS that has been circulating in the black community.

Obama’s excellent and important speech on race in America did little to address his strange tolerance for the anti-Americanism of his spiritual mentor.

Take an issue that Obama did not specifically confront yesterday. In a 2003 sermon, Wright claimed, “The government lied about inventing the HIV virus as a means of genocide against people of color.”

This accusation does not make Wright, as Obama would have it, an “occasionally fierce critic of American domestic and foreign policy.” It makes Wright a dangerous man. He has casually accused America of one of the most monstrous crimes in history, perpetrated by a conspiracy of medical Mengeles. If Wright believes what he said, he should urge the overthrow of the U.S. government, which he views as guilty of unspeakable evil. If I believed Wright were correct, I would join him in that cause.

But Wright’s accusation is batty, reflecting a sputtering, incoherent hatred for America. And his pastoral teaching may put lives at risk because the virus that causes AIDS spreads more readily in an atmosphere of denial, quack science and conspiracy theories.

Obama’s speech implied that these toxic views are somehow parallel to the stereotyping of black men by Obama’s grandmother, which Obama said made him “cringe” — both are the foibles of family. But while Grandma may have had some issues to work through, Wright is accusing the American government of trying to kill every member of a race. There is a difference.

Gerson regards holding such an opinion as beyond the pale – and anyone who would believe such things as deranged. (“This accusation . . . makes Wright a dangerous man. . . . Wright’s accusation is batty, reflecting a sputtering, incoherent hatred for America . . . .”) Gerson is obviously grossly ignorant of the history and substance of these rumors, and the historical context in which they arise. And – like other conservatives dismissive of blacks’ reactions to America’s racial history – he seems to have no sense of what that context means to the people it most closely affects.

First, as a look at the links given above will demonstrate the AIDS conspiracy Wright endorses did not originate with, and is not limited to, African-Americans. White conspiracy theorists have been throwing around wild rumors about HIV/AIDS and germ warfare for a long time, and have developed them into intricate and extensive – and often bizarre – criticisms of both the received history of the AIDS epidemic and the scientific grounding of HIV research. Peter Duesberg, the most infamous of this crowd, is white, and has solid scientific credentials (which is not to say he’s not crazy); it was Duesberg who advised Thabo Mbeki of South Africa, and lent credence to Mbeki’s crazed ravings, resulting in the destruction of that country’s public health system and uncountable deaths. Kary Mullis, also white and an infamous eccentric even before he won a Nobel Prize and went nuts, has likewise thrown his hat into that ring, lending still further credence to charges that are at best irrational and at worst irresponsibly dishonest or just crazy. Many of the other rumor-mongers are white as well.

So Jeremiah Wright is by no means acting alone in promoting such wild theories, nor are such theories evidence of “black nationalism” or “racial anger”. But they do have a particular resonance in the black-American community, and for reasons that make such beliefs, especially in that community, seem almost defensible.

The unconscionable history of abuse and mistreatment – by medical means among others – of black Americans makes it quite simply impossible to dismiss any further story of abuse as unlikely or unbelievable. The shocking reality of slavery alone – that an entire group of human beings would be degraded to subhuman status and treated as property, and not merely as such, but subject to unspeakable mistreatment and bodily abuse at the same time – would be unbelievable if it were not so mundanely true. After America did that to its own citizens, what else is not believable? What else is not possible? In the minds of very, very many black Americans, there is nothing they do not expect America could or will do to them – and on grounds of simple historical fact, they are far from wrong.

That suspicion and resentment find a distinct focus in the area of healthcare. The abuse of black Americans’ bodies by white America is a story that begins with slavery and extends to the modern day. In addition to the horrible abuses of slavery itself, the quasi-medical mistreatment of blacks it entailed stands as its own story. Black slaves were literally bred as stock, and their children sold out of their families, by slaveholders; they were systematically raped, openly, by their white oppressors for that purpose, as well as for simple pleasure. Their health was treated as an economic question – what care they got, and whether they got any, for their illnesses while in captivity was dependent upon its implications for their future profitable labor. In some parts of the South, it was simply cheaper to let slaves die of malaria (and replace them with slaves from more malaria-tolerant African sub-groups) than to treat them. But black slaves and ex-slaves played another role in American medical history.

Southern medical schools in the 19th century openly advertised for slaves or other black patients for students to practice on, and blacks were also often the source of cadavers for medical school dissections, and the subjects of medical experimentation, often against their will. Long before rumors of AIDS or other forms of medical mistreatment, there were long-standing fears in the black community of body-snatching and even vivisection in white medical schools. In some cases, ambitious doctors “borrowed” sickly slaves from white slaveholders, or or purchased them outright, for the purpose of performing experiments, usually (in keeping with the standards of the day) crude, unscientific, and painful or dangerous. James Marion Sims and his protege, Nathan Bozeman, perfected the surgical repair of vaginal fistula by performing a harrowing series of operations on black female slaves before the Civil War; some women underwent up to 30 operations before being cured. After developing a workable procedure on these slave women, Sims turned to operating on white women for profit for the rest of his career. (Ironically, today the procedure is used almost entirely on women of color, usually in the 3rd world, where the cause of these fistulas – tearing of the vagina in childbirth by teenage mothers – is concentrated.) Sims is today honored as “the father of gynecological surgery” with not one but two statues in New York City alone.

These practices continued into the 20th century. It is increasingly-widely known that many medical treatments, having been optimized on white male research populations, do not work as effectively on women and blacks. Again and again it has been shown that aggressive interventions – including basic procedures such as an immediate aspiring for suspected heart attack – are overlooked or under-prescribed for black patients (among other sub-groups). Blacks are vastly less likely to have health insurance in America, less likely to have insurance that covers their actual needs, and more likely to be denied coverage for recommended procedures. They are consistently more likely to remain undiagnosed for life-threatening illnesses, to remain untreated or undertreated for them, and to die of them, than white patients. And those are merely the everyday, systematic injustices that occur. The real scandals are even more shocking.

It has only recently been revealed that, after WWII, the US government conducted extensive experiments involving exposure of human subjects to dangerous levels of radiation, sometimes without their knowledge; almost all of the subjects were black. There have been many publicized scandals involving research on prison inmantes; what is often overlooked is that the subjects of those studies are not jsut prisoners but most often entirely or mainly black prisoners. Many white people today have heard of the infamous Tuskegee Syphilis Study; almost all adult blacks have heard (at least some form of) the story. To whites, the story seems disorienting, unbelievable – to blacks it is all too familiar. That story is illustrative here, in another way: among the black community, the already-horrible facts about the Syphilis Study are often exaggerated to make the story worse than was actually true. Instead of a program to monitor untreated syphilis among already-infected patients, it is widely believed by black Americans to have involved actually infecting healthy patients with the disease. Instead of a limited program that grew out of a well-intended public health effort (scaled back to passive monitoring when the Depression hit and funding dried up), it is often believed to have been a calculated and planned program of genocide. But the actual facts are staggering enough – and these exaggerations are logical extensions of what did in fact occur; in principle and in effect (if not in literal fact) they are not even exaggerations.

It is difficult for those who have not had experience in the area to understand the pervasiveness of distrust this history – particularly Tuskegee, but the rest of it as well – has engendered in the black community. Teaching healthcare ethics in inner-city colleges, I have never once had a class with more than a few black students in it in which it was not the case that at least some – usually almost all – of the black students had heard of the Tuskegee scandal; not one of my white students has ever known of it before entering the class. Working in a major university healthcare center in a majority-black city, I once discovered it was literally impossible to get any black patients to even answer a simple questionnaire or listen to explanatory information about advanced directives for healthcare (being approached on the subject by a white man in a white coat probably didn’t help). I heard more than one whisper to a companion, as I walked away, that this mechanism – the foremost tool for promoting patient autonomy and individual rights in healthcare – was a plot by whites to kill blacks by turning off their life support. To a person who does not share a familial or cultural history of abuse and mistreatment of the kind detailed above, these fears and obsessions seem almost crazy. Why is an entire cultural subgroup fixated upon one regrettable, but aberrational, scandal from decades ago? Why would they fear the system that, almost alone in modern society, still embodies a truly altruistic ethos and agonizes over its own failure to adequately serve its underserved client populations? How crazy do you have to be to think your doctor is trying to kill you?

Not crazy at all, if you’re black. It has been done. That is the bottom line – the inescapable truth that comes back again and again in any context which puts black Americans under the influence of the healthcare system. That system – particularly, and mostly, mainline medicine as practiced by white male physicians – has turned itself to the organized and systematic abuse of black patients and research subjects, not in one or a few isolated incidents, but again and again, in the most varied settings and through the most bizarre and abusive practices. It is not crazy – it does not even require any great stretch of the imagination – to think that medical doctors, or the government, would have created a disease to decimate the black population. They have allowed diseases to spread through that population while active working to prevent their cure. They have exposed blacks to diseases and toxic conditions, and invented birth control regimens marketed primarily to black populations, that had the effect of systematically diminishing, sterilizing, and to at least some degree eradicating black Americans as a group. They have connived at the importation of addictive drugs that have primarily affected the black community, in epidemic proportions. The Reagan administration did ignore AIDS for years, at a time when the most good could have been done to head off the eventual epidemic, out of its repugnance at the pimary victim populations of gays and non-whites.

If the government had actually anticipated that AIDS would particularly affect the black community, and stood aside to allow it to happen, that would be nothing more than an absolutely literal recreation of its behavior in regard to other diseases in the past. The step from there to the idea that the government might actually have created that disease is a small one, and hardly far-fetched in light of other things the government and medical researchers really have done. Now, it appears in fact that the US government did not invent AIDS, or deliberately encourage its spread through the black community – although they did stand by and watch for years as it happened in front of them. But with all this history behind, who would not suspect the government might have played an active, and not just a passive, role in creating the epidemic? If you were a member of a group condemned generation after generation to the kinds of treatment detailed above*, and then witnessed the history of AIDS – its prevalence closely tracked by government researchers who somehow could never quite find anything useful to offer as it destroyed the most vulnerable and downtrodden subgroups of American society – how could you not at least suspect that there was more to the story than met the eye? Given what actually has been done, time and again, generation by generation right up to the present, on what grounds can it be asserted that there is anything the government, or the medical community, might not do if they took it into their heads? What story possibly could be too far-fetched to believe in, given the range and number of seemingly unbelievable stories of medical abuse of blacks that are actually true, documented, and admitted?

Gerson, however – and I would guess at least 90% of white America – cannot grasp this. He really thinks it is unthinkable to imagine the things Jeremiah Wright imagines. In fact, he thinks such beliefs are so far gone that they – the beliefs themselves, and not the history that gives rise to them – are unAmerican:

[Believing that the US government created AIDS and unleashed it on black Americans] makes Wright a dangerous man. He has casually accused America of one of the most monstrous crimes in history, perpetrated by a conspiracy of medical Mengeles. If Wright believes what he said, he should urge the overthrow of the U.S. government, which he views as guilty of unspeakable evil.

This reaction is in a way darkly humorous. Gerson finds it literally unbelievable that black Americans would believe that America is guilty of “monstrous crimes . . . perpetrated by a conspiracy of medical Mengeles”, and of “unspeakable evil”. The joke is that, not only do many blacks believe the things he thinks are unbelievable, but those things are, in fact, true. Leaving aside the question of AIDS, what was the 40-year Tuskegee Study but “a conspiracy of medical Mengeles”? Does not the unending history of research abuses, disdain for autonomy or consent, torturous experiments on helpless slaves and prisoners, and systematic mistreatment and undertreatment of black patients constitute “unspeakable evil”? And even if the AIDS story were true, it pales, in timespan, prevalence, death toll, and sheer moral degeneracy, beside the 400 250-year history of chattel slavery, and 400 years of systematic oppression, that America openly and deliberately imposed on its black citizens. Is that not “one of the most monstrous crimes in history”? Since America, and its doctors, did in fact do all this and more, how is it unthinkable that it should have committed just one further such abuse, in the case of AIDS? That belief appears in fact to be mistaken, but in light of history it’s hardly irrational. And if Wright, knowing what he knows, and believing (mistakenly) what he believes, does not actually urge the overthrow of the US government, is it not at least understandable he should cry out to God to damn the government?

But Wright’s accusation is batty, reflecting a sputtering, incoherent hatred for America.

This is nonsense. Wright’s accusation is perfectly rational, although false. I have no idea whether Wright holds a “sputtering, incoherent hatred for America” (though he appears to me to be in no way incoherent). But the belief in the AIDS conspiracy reflects nothing more than the established historical facts of the syphilis conspiracy, the Holmesburg prison dermatology conspiracy, the Norplant (semi-)conspiracy, the nuclear radiation conspiracy, the conspiracy to promote research on slaves, the conspiracy to steal black bodies for medical school dissection, and many more over many years. The widespread black suspicion regarding the medical profession is grounded on facts Gerson has obviously never heard of. It is far more rational, and in content far more true, than Gerson’s offhanded dismissal of such suspicions as “batty”, false, or inexplicable.

Obama’s speech implied that these toxic views are somehow parallel to the stereotyping of black men by Obama’s grandmother, which Obama said made him “cringe” — both are the foibles of family. But while Grandma may have had some issues to work through, Wright is accusing the American government of trying to kill every member of a race. There is a difference.

Here I think Gerson is just suffering from the traditional Conservative Reading-Comprehension Disorder. Obama did not state any equivalence between the views of these parties – he said that he cannot eject either of them from his life for the same reason – that they are family. (And why would he? If he loves his grandmother in spite of her unconscious prejudices regarding blacks, why would he not love Wright in spite of his factual error regarding AIDS?) And again, as for Wright’s accusations about AIDS, he may be wrong but there is no ground for regarding those views as extremist, outrageous, or inexplicable. If Obama’s exposure to his grandmother’s unreconstructed ideas made him “cringe”, how could Wright’s knowledge of the very real history of medical abuse of US citizens not take the form of a much stronger reaction?

The fact that that reaction is forthcoming, and resonates so strongly, as I am sure it does, with so many black Americans, is a reflection not of their “hatred of America”, but of their acute awareness of America’s treatment of their families and others like them, and of their perception that that history has not fully run its course. In light of that history, the calls of oblivious whites for a “post-racist” or “colorblind” society are not just stupid, but morally offensive. Too many whites are like Gerson – simply uncomprehending that blacks can really believe that America would continue to treat them, today, the way America has always treated them in the past, right up to today. The first step in reconciling these two visions of America – a credulous vision of universal beneficence maintained by exhaustive ignorance of black history, and a corrosively suspicious vision grounded on pervasive historical reality – is to wake whites up to the historical grounds for, and justification for, black grievance and suspicion. That grounding of historical fact goes far beyond slavery and Jim Crow (as if those weren’t proof enough of the darkest suspicions imaginable); it is a factor of literally every generation, every family, in some way every life that makes up the black community in the United States down through the years, and it invades every aspect of such lives, including, shamefully and grievously, their encounters with the “healing professions”.

Obama – with perhaps too much sense of balance – brought forth the tiniest, least threatening glimpse of that history in his speech, and put it in the context of white grievances over “reverse discrimination”. (Talk about inappropriate parallels!) Even that was obviously too much for Gerson and whites like him. It spun his head, boggled him with aromas of “sputtering, incoherent hatred”. Until that reality sinks in with all its awful force – clearly too much for defensive whites to grapple with even at this date – Obama, and we all, may be doomed to continue living out that cancerous, Faulknerian past that is not past, within sight but not within grasp of what might have been.

UPDATE: As others have noted, slavery did not persist for 400 years in America; it is generally agreed that the first known slave was brought to the colonies in 1619, and slavery ended with the end of the Civil War in 1865, not quite 250 years later. It has been almost 400 years that black Americans have lived as the de facto, and for most of that time de jure, underclass. The description in the text above elided the distinction between the two; it has been corrected.

UPDATE: As Tgirsch notes in comments, Obama’s church is not affiliated with the Baptists. 
* And much, much more. A heartbreaking, infuriating, but very necessary review of the medical mistreatment of black Americans can be found in the indispensable volume Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present, by Harriet Washington. As Washington herself notes, its 400+ pages only skim the surface of experimental abuse of blacks, and leave therapeutic mistreatment almost untouched. This legacy is truly evil, and poisonous in ways that can only be dimly sketched.

The most entrenched redoubt of medical power (though least well-grounded in research and knowledge) was psychiatry. Not only did the head-shrinkers lay claim to the most occult knowledge of human functioning and health, but they stood against a patient population that was inherently and societally almost unable to defend itself. Members of, possibly, the most severely and unsympathetically stigmatized stratum of society, mental patients were given no credence, and often had no recognized legal standing, to assert their own values and choices in treatment. And it is true that in many cases, patients with mental illness could not in fact act for their own interests or competently manage their own treatment and caretaking. But the presumption that no such patient could have a valid opinion about their own care, coupled with the prejudice that they were unfit for “normal” society, and likely dangerous, meant that virtually anything could be done to anyone, if advocated by a doctor armed with a diagnosis of mental illness. The things that were done were in many cases almost unthinkable.

Howard Dully spent over 40 years thinking about what was done to him. It took him a full life of hardship and failure to finally understand his own fate, and to come to terms with it. That anyone could have survived, let alone found peace and stability, after having lived his story, is an amazement in itself.

Dully is the author (with a professional co-writer) of My Lobotomy: A Memoir. The subject of the book is exactly what the title suggests. The story it contains is heartbreaking.

Dully’s life is difficult to summarize, except to say that it was unremittingly harsh almost from birth. Dully was born in California in 1948; his father was a hard and unemotional man who was driven to work excruciating hours, sometimes at as many as 4 or 5 low-skill physical labor jobs at the same time, partly by the need to support his family, partly by his own obsessive work ethic. Howard grew up a big kid (he’s now 6’7″, 350 lbs) who picked on his younger brother; when he was 4 his mother died after giving birth to a baby brother with a severe neurological deformation – the baby was placed with relatives and never spoken of again within the family. Howard and his family bounced around various friends’ and relatives’ homes as his father struggled to earn a living, and Howard suffered constantly both from missing his mother and from the severe discipline he suffered in some of these homes. Things really got bad when his father married again, to a woman with two sons of her own. Dully claims that she simply resented and hated him; from reading both his own stories of his home life, and some of his doctors’ notes, it is easy to believe he is correct. Howard, in the meantime, was legitimately a handful for any parent: he was apparently flightly and unreliable to an extreme degree, was aversive to school work, discipline, and hygiene, and often fought with his brothers, though they had a generally good relationship. As he got older he began doing stupid kid pranks – shoplifting and stealing items from cars, and playing hooky. As a huge and growing boy, he was constantly hungry, but was not allowed to eat between meals and was beaten for taking snacks. His step-mother also had some sort of obsession with her furniture and household trinkets, and would beat Howard for touching anything in the house, sitting on the parlor furniture, or using the front door. His step-mother would beat him for any infraction, and for things that weren’t infractions; later his brothers confirmed that she did indeed beat him for things she did not mind when done by her own sons, and would rave at him for no reason at all. When his father got home, he would get another beating – his father made him choose a piece of firewood to be beaten with, and Howard developed the skill of picking ones that were flexible enough to hurt less but strong enough not to break (which would encourage his father to continue the beating with his bare hand). Between his actual behavioral problems, his pre-adolescent awkwardness, the fact that his step-mother did seem to truly want him dead, and his father’s absence and emotionally and physically violent treatment, Howard seemed doomed to a life of misery no matter what might have happened. What actually did happen is unbelievable.

Howard’s step-mother apparently conceived the idea that she could get rid of Howard if she got the weight of professional opinion on her side. She began visiting a series of psychiatrists to complain about her son’s behavior, but none of them would agree he had to be institutionalized or removed from the home. Several wrote consulting notes to the effect that they were convinced her harsh treatment was the problem and that she should moderate her behavior toward the boy. She moved from doctor to doctor trying to find one that would agree with her. Finally she stumbled onto Dr. Walter Freeman.

Freeman was the pioneer, in the US, of the new treatment of psycho-surgery. He actually coined the word “lobotomy”, and popularized the use of that treatment in this country. He was the first US physician to see the procedure, after it was developed in Europe just before WWII; Freeman brought it back to the States and traveled the country in specially-modified vans or station wagons that he called his “Lobotomobiles”, giving demonstrations of both electro-convulsive therapy (using a machine he built himself; when it broke down, he simply held the bare wires against the patient’s head for as long as he felt was appropriate, with no mechanism for monitoring voltage or current) and lobotomy. According to the Dully, relating reports of academic researchers who studied Freeman’s career, Freeman was a constant self-promoter and showman: he would perform several lobotomies in a day, every day, in front of medical audiences, liked to demonstrate how easy it was by sometimes using ordinary household implements rather than surgical tools, and developed a signature two-handed bilateral technique in which he would insert “leucotomes” (the lobtomy knife) into both lobes of a patient’s brain and then simultaneously jerk them both through the tissue with a flourish. At times, his death rate ranged upward of 20%. Nobody seemed to think this was cause for alarm. Patients were operated on without their own knowledge or consent, and authorization was freely obtained from courts or patient guardians after reassurances from Freeman that the procedure would solve all the patients’ problems. Often, no precise psychiatric diagnosis was attempted before the lobotomy was performed; lobotomies were used for conditions ranging from headaches to schizophrenia. More than a few were performed on minors, even pre-teens; there were questions about such cases, but little organized opposition. Freeman was profiled in popular magazines, and sometimes hailed as a god, delivering sufferers from their misery. There were many detractors in the medical community, but the great benefit of lobotomy was that it often made patients docile enough to live with their families without monitoring, meaning they could be discharged from the large state mental institutions that were commonplace then. This made the procedure wildly popular with the managers of those institutions, whose patients had no effective representation to oppose the treatment plans made for them by others.

After a few years, Freeman heard about, and again pioneered, a variation of the lobotomy procedure called “trans-orbital lobotomy”, often referred to as “ice-pick lobotomy”. In that procedure, a long, sharp, thin instrument was pushed along the eyeball parallel to the nose, and through the back of the eye socket (“orbit”) into the skull, and into the frontal lobe of the brain. The instrument could then be levered back and forth, and up and down, to tear through the frontal lobes and disrupt their neural circuitry. There was no method for visualizing the exact placement of the instrument in the brain, or the location, depth, or extent of the lesions created; the method was simply to stick the metal rod in through the eye socket and wiggle it back and forth to tear the brain tissue randomly. The effect was almost as dramatic as an open-skull lobotomy, but there was no external wound, and it could be performed under mild anaesthesia. The procedure could be done in an ordinary doctor’s office, and took about ten minutes. In many cases, the surgical instrument used was, in fact, an ice pick. (Freeman’s personal lobotomy instrument was labled “Uline Ice Company”.) Patients were sometimes sent home afterward in a taxi cab.

Freeman began popularizing the trans-orbital lobotomy, sometimes performing as many as two dozen procedures a day on patients in mental institutions and hospitals. In some cases, patients were operated on against their consent; after the procedure, they lacked the drive and wherewithal to sue. After some years traveling the country in his Lobotomobile, he finally settled in the South San Francisco Bay Area, near where Howard Dully’s family were living. Eventually, Dully’s step-mother asked to see him.

Freeman met with her a number of times over a period of two months, duly recording her wild stories of Howard’s unmanageable behavior (some of which later turned out to be pure fabrications – such as the story that he had beaten his brain-damaged baby brother almost to death). From the beginning the step-mother openly solicited some kind of dramatic professional intervention. Freeman hesitated at first, insisting he would have to meet the patient and interview the other family members before coming to any conclusion. (What seems incredible is that he began formulating treatment plans with the mother for weeks before ever once meeting Howard.) He interviewed Howard’s father one time; the father gave a much more balanced report of Howard’s behavior, but Freeman didn’t pick up on the clue. He began to meet with Howard himself, and found him reasonably normal though somewhat uncommunicative (who wouldn’t be?). But he kept meeting with Howard’s step-mother, who still filled him with tales of how afraid she was of Howard, how her other sons were afraid of him and were constantly beaten up by him (they deny this), and finally how Howard had beaten up his baby brother in infancy (his entire family denies this – and note that the step-mother was not part of the family at that time). Freeman seems to have accepted everything she said, and viewed Howard’s truancy and other bad behavior through this fictionalized and delusional lens. After four meetings with the step-mother, only one meeting (ever) with Howard’s father, and four visits with Howard himself, Freeman recommended that they should attempt to “change his personality” with a trans-orbital lobotomy. Howard’s step-mother immediately agreed, and took the papers home for his father to sign, which he did without ever speaking to the doctor again. Freeman cautioned the parents not to tell Howard what would happen – only that he would be admitted to the hospital for “tests”. Howard excitedly looked forward to his night in the hospital, because he had heard they gave you Jell-O there. And they did. It was two weeks after his 12th birthday.

Freeman lobotomized Howard the next day. Howard has no memory of any of the events of that day. He contracted a fever and an apparent infection (Freeman was infamous for not sterilizing his instruments before surgery; you can see, in the actual photograph of Howard’s procedure, [see photo at end, below the jump] that he is not wearing gloves), but recovered soon enough.

The rest of his life was a disaster.

To make a long story short, the lobotomy did not placate Howard’s step-mother. She continued to persecute him, and to complain to Dr. Freeman about Howard’s behavior. Freeman claimed that Howard was improved after the surgery. His step-mother began demanding that he leave the house – at the age of 12 – and so he was sent around to a variety of relatives and foster-home settings. He found one family he liked, and who doted on him, but who were very religious. His father objected to their religion, and took him from the home. He continued to get into trouble at school, and was eventually sent to a local psychiatric evaluation facility, who found him normal and discharged him. He spent about a year on an adult psychiatric ward at the age of 14. At one point his parents seriously discussed simply giving him an allowance and telling him he would have to find his own apartment and take care of himself – at the age of 15. He began a downward spiral of increasingly anti-social behavior and lack of discipline, resulting in juvenile hall, then a state psychiatric facility for observation, then a children’s psychiatric residential facility, then a long-term state psychiatric locked facility – all before the age of 17. He was repeatedly told by the staff of these facilities that they knew he was not mentally ill – there was just no procedure for discharging him, and nowhere for him to go. His family refused to have him at home, and only his father visited, at intervals.

After reaching adulthood, he was discharged to a halfway house in San Jose, and began 4 decades of aimlessness, petty crime, and continual inability to maintain any semblance of a stable life. The lacunae and byways of his distorted life were too many to recount here, but the bottom line is that he suffered from two crippling problems: one is that his brain had been severely damaged by the horrendous procedure he endured, and the other is that he had never been socialized into living a responsible life. His development was cut off at the age of 12. He simply did not know how to do any of the things you have to do to live normally – how to feed himself, how to handle money, how to work at a job. He invented a “brilliant” check-kiting scheme that involved stealing other people’s tax refund checks, depositing them in a bank account under his own name, then writing checks on that account to buy merchandise which he would then pawn for 1/3 its value, giving his real name and address as security on the checks he had written; he was amazed when they caught him. He was homeless for long intervals, drank too much, had a succession of terrible relationships with people equally as strung-out and fucked up as himself, started businesses that he bankrupted by partying with the money out of the cash register, and in general had no way of planning for any future further away than his next bad decision. Weighing over 300 lbs and smoking three packs a day, he had a heart attack in his 40s. After many long, bad years, he fell in love with a woman who realized she had to get them both clean and sober, and into some kind of stable lifestyle, if they were going to survive – and, miraculously, they managed it together. He eventually found a job as a bus driver, and has worked consistently in that field for some years now.

A few years back, when Dully was well into his 50s and finally finding some (imperfect) stability, an NPR radio producer contacted him, saying he was putting together a program on the life of Walter Freeman, and had contacted a few of his old patients; they wanted to interview Dully for the spot. He agreed – but after he talked for some time with the producer and his assistant, they became so enthralled by Dully’s story that they changed their minds. They wanted to do the show about him – to get Dully himself to actually narrate the show and interview the other patients and participants, including his own father. They also told him that they had located Freeman’s personal archives – which he had donated to George Washington University in anticipation of the professional acclaim he was sure would come; as a former patient, Dully was entitled to ask to see his own medical records.

Dully desperately wanted closure on the pain and bewilderment that had haunted him his entire life. He was also terrified to, but eventually agreed to, interview his father for the show. He began travelling the country, interviewing former lobotomy patients or their surviving family members. Some said they did feel the operations had been beneficial; most said the results were debilitating or horrifying. One woman broke down in recalling that the operation had made her mother so childlike that she, her daughter, had never thought of her mother as her mother, or as the grand-mother of her children; she had never introduced her own daughter to her mother. Dully spent extensive time with his own father, trying to elicit some reaction to the fact that he had been lobotomized at the age of 12, and his father had signed the consent to allow it. At no point does his father offer anything that seems genuinely humanly emotional or authentic, and at no point does he acknowledge what was done to his son or how momentous it was.

The radio show was a smash. It was previewed to a select audience in New York, including experts in medicine and the work of Walter Freeman; they were left in tears, and responded with a standing ovation. Dully replayed the interview when he appeared as keynote speaker for the National Guardianship Association (a group for those who serve as legal guardians of mental patients); they had the same reaction, and he was mobbed for autographs and questions. When it finally aired on NPR, the station’s server immediately crashed with e-mail messages expressing how moved and admiring the listeners were. (I can’t imagine this book isn’t going to be made into a fantastic movie soon. It needs to be.) The show remains available on the NPR Web site; it is moving and at times horrifying. Dully’s book contains more material, and more elaborate context, for the interviews and sound bites heard on the program, which is only 20 minutes long. (His description of being awed by Frank Freeman, Walter’s son, describing in technical clinical terms his father’s brilliant successes, and claiming that he himself could perform lobotomies with the same instruments – and then seeing Frank pop out of his bedroom in his “work clothes” – a rent-a-cop security guard’s uniform – is priceless.) The aural impact of the people’s actual voices is unforgettable, however. You hear one poor woman chirpily singing “You Are My Sunshine” with her lobotomized mother who remained a little girl to the age of 93; she explains that, until that day, she had never brought her husband of 19 years to meet her mother, because she couldn’t face the fact of her mother’s debility. When Howard asks her what made her change her mind that day, she answers, “You. Do you know how many people you are championing?”

Howard Dully is still a bus driver in San Jose, CA. He is also a noted speaker on lobotomy and patients’ rights issues. He remains a champion. His greatest victory is summed up in his own final words from the book and the radio program: “I did feel, at last, truly at peace. . . . I had found my place. I was no longer ashamed.”

* * * * *

This story resonated strangely with me, when I realized that I could have met Howard Dully during his wandering years. I grew up in the Bay Area and attended San Jose State University, in San Jose, California, during the period that Walter was living in the same town at the lowest ebb of his life. I worked for a year in juvenile residential psychiatric facility similar to the one he lived in, and, as an EMT, I transported mental patients to Napa and Agnews State Hospitals, where Howard was incarcerated for long periods. (Basically minimum-security prisons for people who got on the wrong side of a psychiatrist, I wouldn’t wish those places on anyone – and sometimes felt conflicted about my role in placing people there, though I remember angrily defending myself against a radical professor who criticized my participation in the system.) I was there just after the great wave of “de-institutionalization” – patients’ rights advocates found an unexpected friend in Governor Ronald Reagan during the 1960s, who was perfectly willing to empty the large state mental facilities and dump patients on the streets with almost no support. The large concentration of halfway houses like the one Howard lived in, near the San Jose State campus, was the result of the closure of the long-term institutional centers. Just as Howard describes, the patients were forced to leave the halfway houses during the day to “socialize”, but were provided with no employment, therapy, or job training, and so would simply congregate downtown or on the college campus; I saw many of them in the vicinity as a student and later an EMT. Though it’s unlikely, one of them could have been Howard. I certainly recognize many of the places he mentions in the book (though I was never brave enough to go into the Saddle Rack – the redneck bar he frequented in those days). At one point we apparently lived within a few blocks of each other. I knew the rough outlines of that world, but Howard’s book lays bare the inside of the system, and the ease with which people can get caught up in it.

It has to be said that it’s hard, throughout the story Dully tells in his biography, to see exactly where the lobotomy fits into the picture. As he himself reports, his behavior was not well controlled even before the lobotomy – though it hardly seems like anything more than the usual ne’er-do-well kid stuff. His step-mother truly seems to be an unmitigated evil, and even if she hadn’t had him lobotomized, nobody would have come out of that situation whole and well, but his father’s seemingly soulless and disingenuous relationship to his own culpability, and his son’s desperate need for affirmation, can be understood as the product of his weird Christian Science upbringing (where he apparently learned that you don’t dwell on “negatives”, or show strong emotion). Howard’s later troubles, though harrowing, don’t seem that atypical of the lives of more than a few people who found they just couldn’t make it in the straight world, and wound up down and out, living hand to mouth and having trouble with the law. It doesn’t take a lobotomy to get into that position. But Dully had all that and a lobotomy – which complicates the picture, and also underscores what a triumph his life has finally become.

More than anything, this book illustrates how grinding, and how merciless, the system of antagonistic medical power can be. On the radio show, while reading, live, for the first time, Walter Freeman’s summary of his step mother’s libelous “case report”, and his father’s complacent acquiescence in their plans to cut his mind, Dully says heartbreakingly: “I was supposed to fight all this, huh? No way. A twelve-year-old couldn’t stand against all this. It wasn’t fair.” It surely isn’t.

The strange and harrowing history of psycho-surgery was a brief one. At one time it transfixed medical ethics as a paradigm case of the clash of values and the appropriate limits of medical authority. But as the horror stories began to seep out and the bizarrely unscientific nature of the procedures became more apparent, and especially as the patients’ rights movement grew some teeth, the issue simply disappeared. Such procedures came to a halt in the late 70s, about the time of Freeman’s own death (and that of his last hapless patient). In some jurisdictions they were banned outright, or placed under stringent safeguards of patient interest. The rise of effective psychological medications – not without their own significant side effects – also made the crudeness and destructiveness of the surgeries seem unnecessary. (To this day there is no known method for guiding or controlling the specific pathways, or predicting the consequences, of large-scale brain lesions like lobotomy.) They are simply not performed anymore, and the patient-autonomy pendulum has swung far enough, even in mental health, that such free and easy invasions, on such a scale, are not likely to recur. My own first textbook in medical ethics – the 1981 original edition of Mappes and Zembatty’s Biomedical Ethics – devoted two full sections to behavior modification and psycho-surgery; the current edition contains no mention of either topic.

But the larger issue this tale raises remains germane. The tension between expert opinion and patient values remains as acute as ever, even as patient-centered decisionmaking and autonomy have come to be watchwords in healthcare. And the terrible vulnerability of the mentally ill, or even anyone simply labeled mentally ill, remains. Once that label has been put on, it becomes impossible to get anyone – still less medical professionals – to see one’s behavior, values, or decisions through any other lens. And the temptation to substitute judgment for the mentally ill becomes insurmountable for too many people – a temptation that is indulged and ratified too easily by both the health and legal systems. We are unlikely to see many more 12-year-old lobotomy victims, but we are in no way unlikely to see more people caught in power struggles with doctors, parents, administrators, judges, and family members who “know best”.

UPDATE: The blog Neurophilosophy has an excellent review of the history of lobotomy as a procedure. Howard Dully himself contributes in the comments thread.

SECOND UPDATE: Moved photo per reader’s request.