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 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.

The winger blogs are all a-twitter over a story noting that the Omnibus Budget bill that was (finally) just passed contains a provision – known as the Dickey-Wicker Amendment, which the religious wingers have stuck in every budget since 1996 – prohibiting federal funding for research “in which human embryos are created, destroyed, discarded, or knowingly be subjected to risk of injury or death”. Setting some kind of a record for intellectual incompetence, the right-wing CNSNews mis-reported this as “Obama Signs Law Banning Federal Embryo Research Two Days After Signing Executive Order to OK It” – which, in one single sentence, misrepresents the event (he did not sign a law on embryo research, he signed the budget bill, which contained one small amemendment addressing embryonic research among its reported 3,500 pages of text and appendices), false as to fact (his executive order did not address embryo research), and completely wrong in its implication (the budget amendment does not undo the research policy Obama announced, as this headline implies). Despite this falsity and confusion, the event is viewed as some sort of humiliation for, or hypocrisy by, President Obama, since he had made a point of repealing the Bush ban on stem-cell research funding just two days before signing the budget with its unrelated embryo-research amendment. Much chortling and back-slapping is now underway, among people who know nothing about the issue and are apparently too dumb to read.

Yes, certainly the Dickey-Wicker ban is stupid, anti-science and anti-intellectual, and annoying. But it does not undo the policy that Obama overturned, and which Bush had previously implemented. (This much should have been obvious, even to the wingers, and even without reading: since the Dickey-Wicker Amendment predated Bush’s policy by almost 6 years, there would obviously have been no need for that policy, or the immensely divisive fight over it, if they merely did the same thing, right?) In fact, it’s effect is quite small, and easily evaded, and is aimed at an entirely different scientific procedure than the one addressed by Obama’s recent policy statement – not that anyone in the right-wing monkey cage seems to know that.

The Bush policy went far beyond the Dickey-Wicker amendment. It prohibited funding for any lab working on human embryonic stem cells in any way, other than research using a small number of specifically authorized cell lines. It meant that labs recieving any federal funding could not do any research on the prohibited cell lines (i.e., virtually all of them), even if the funding for that research was provided by another source. They could not even use the same labs and equipment – they had to build a completely separate facility to do the work, which obviously was prohibitively expensive. Since almost all research labs receive federal funding of some sort, the policy was intended to – and in large part did – completely shut down almost all stem-cell research regardless of funding source.

The Dickey-Wicker Amendment banned funding for reseach conducted on embryos themselves. This includes the process of creating stem cell lines for further research, since the stem cells are taken out of an unused, non-implanted IVF embryo, but it does not prohibit “stem-cell research”, that is, the use of stem cells themselves, not the embryos they were taken from. (A stem-cell “line” is a continuously-maintained collection of cells in laboratory flasks, transfered periodically to new flasks as they divide and grow. It’s one of the unique properties of stem cells that they can be grown permanently in this way, unlike most other body tissues. The line is created by taking stem cells out of an embryo, but that only has to be done once for each new line; after that, it’s just the individual cells themselves that are grown – they do not form embryos, and could not be implanted to create a pregnancy, while they are growing in the culture medium. “Stem-cell research” uses these separated cells, not developing embryos.) Dickey-Wicker has always been interpreted as permitting funding for stem-cell research, but not for the creation of new lines of cells. Scientists accommodated this by using private funding to generate cell lines, and federal funding for research on the cells. Bush not only banned that, but imposed restrictions on the usage of existing cell lines that choked off vast amounts of ongoing research.

Dickey-Wicker is a bad policy, because the federal government is the source of the majority of basic-science funding, but it doesn’t actually prohibit stem-cell research. The combined effect of the repeal of the Bush ban and the re-authorization of Dickey-Wicker is to restore the situation before Bush meddled with it, and to free up every qualified lab in the country to do embryonic stem-cell research using any cell lines available – instead of just those that can afford to build wasteful, redundant facilities. And, since the cell lines on which Bush did permit research were maintained in a growth medium that cannot safely be injected into a human body, they could not be used to develop clinical treatments as the research progressed. Obama’s policy change removes that barrier.

Note, finally, that it was Bush‘s policy that was criticized as hypocritical – both by left- and right-wingers – because it inisted on prohibiting large amounts of research for the supposed reason that doing so with the products of destroyed embryos was somehow immoral, but at the same time explicitly authorized doing exactly that thing on a small number of specifically-designated lines that were in no way different in origin from the many others that were excluded. It was clearly just an awkward and stupid political compromise that carried no moral conviction – but it bottlenecked a major scientific field for most of a decade.

It would be much better to repeal both the Bush and Dickey-Wicker anti-science policies, but even so, Obama’s reversal is a huge step forward. He is hardly at fault for being unable to also remove a stupid amendment has been stuck into the budget bill by winger cranks for over a decade now. As was Clinton before him, he is in no position to hold up the entire government budget over one minor issue. Like the anti-choice Hyde Amendment, and other idiosyncratic policies, Dickey-Wicker was forced into the budget bill – one of the few bills the president simply can’t veto – because a small number of extremists are willing to crash the government, and the larger number of practical public servants can’t let them do it. But it’s hardly a humiliation, except for the wingnuts who put it there. And its reauthorization, backward as it is, in no way undoes the great good Obama has done with his previous pro-science decision.

Crossposted to Lean Left, the political blog I contribute to, because I’m shameless taking advantage of the fact that Lean Left is aggregated at Memorandum and SufScrup is not.

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.

The manifold horrors of the Bush years are finally behind us, and President Obama is already taking steps to end their ravages and wipe away the stains they have left upon the United States. In the area of reproductive autonomy, he has sent encouraging signals that he will repeal the odious “Gag Rule” and “Conscience Clauses” and oppose legislative attempts to further intrude upon women’s freedom. Hopefully the discriminatory Hyde Amendment will finally bite the dust as well. But that those are salient issues is only evidence of how much has been lost in a short time.

That we have to beat back absolute absurdities, such as that hospital personnel may refuse to treat patients in need out of personal prejudice alone, or that any yahoo with an ideological grudge, down to and including pharmacy clerks and cash register tellers, can withhold products and prescription medications on the same whim, means that the first promise of the unfolding Obama administration is simply to undo some of the trespasses of recent years, restoring what, under Clinton, nobody imagined could be lost. Actual progress will have to be a follow-on goal.

So it is not merely “choice” – reproductive autonomy in the area of birth control and abortion – that is under siege, but the entire range of choices women may make regarding their healthcare, sexual and reproductive lives, and liberty in general. Not only the right to abortion has been restricted, but, as part of their war on women’s sexual health, women’s rights to make factually informed choices about their own health and treatment options, to choose, purchase, and receive medicine and healthcare products prescribed or recommended for them, to choose how to balance their sexual and healthcare needs without interference, to choose their own goals and methods in family planning without prohibition on extremist religious grounds, to choose to use scientific medical advances without arbitrary religious restriction, and to make any number of other choices regarding their health and bodily autonomy, have systematically been assaulted, hamstrung, and denied by legions of religious-extremist obstructionists inside and outside the Bush administration. The first item on the “choice” agenda must now be restoring the basic set of choices that existed before the whackos got loose; only then can we begin to extend and refine the range and accessibility of those choices.

There is good reason to be hopeful, as, barely days into the Obama Presidency, a new sense of decency emanates from Washington and the most egregious crimes of the recent past are repudiated and undone. There is little reason to be ecstatic, however - and those who value women’s autonomy know too well that women are always the first to be thrown overboard for political expediency, and that women’s bodies and lives are of little weight in the traditional political balance. It would be foolhardy to expect President Obama to be too radical a departure from business as usual in that respect, though he has been generally good on choice, and on scientific, vs. religious, policymaking. Sadly, I expect that “Blog for Choice Day” will be an annual tradition that outlasts even this administration. But this is certainly the beginning of better things to come, and the victory has never been out of sight, however hatefully it has been contested. Good days ahead!

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!

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.

Robert has been documenting, step-by-step, the pathway he, his equally-admirable wife Julie, and Schuyler (pr. “SKY-ler”) herself have followed, first coming to terms with Schuyler’s developmental difficulties, then battling the public schools’ broken and indifferent system for educating special-needs children until finally moving to a city (Plano, TX, of all places) that offered what Schuyler needed. At the urging of his growing base of enthralled fans and well-wishers, he turned the blog into a book that hit the market just this week. It has already received considerable word of mouth and small-market press attention even before release; I am convinced it is just about to explode into a real sensation, and deservedly so.

Robert has an ability to communicate the pathos and humor of his family’s situation, and even more strongly Schuyler’s unbelievably spunky and winning personality, and her brilliantly unique triumph over the multiple dirty tricks life has played her. Schuyler is without question the star of his blog (which, he says, she still has not read, nor has she the book, either, though she is fully aware that she is a media queen). It is impossible to read their story without falling in love with Schuyler (and indeed she is regularly showered with largesse by fans, often anonymous, who have visited the family’s Amazon wish-lists). “Schuyler has a posse!”, I told Rob, and he agreed that one of the most satisfying side-effects of blogging about her condition is that she has garnered such a wide-spread support base. That is due to Rob’s ability to make her come alive through his words – though it’s obvious Schuyler is giving him a lot of great material to work with.

In person, Rob comes across just as you’d imagine from his blog: funny, personable, thoughtful, fiercely dedicated to Schuyler and her needs, worried about her future, and laceratingly honest about his own uncertainties and shortcomings (which I think he overestimates). It was great fun meeting him, and I was glad to see the St. Martin’s Press staff just as enthused about the book as were the many fans who turned out to meet the author.

I mention all this simply to add this plug for a book that deserves to be read, and will break your heart and change your viewpoint when you have done so. I can’t communicate the impact of Rob’s blog or the book it gave rise to, but I urge everyone to experience them for themselves.

(1) Go buy this book:

(2) Go read this blog.

You can thank me later.

UPDATE: Fixed an editing mistake.

The article generated a fascinating discussion thread, however (with minimal, but nonzero, trollage) - one that I only stumbled across today by following a visitor link (thanks!). I’m sorry to be so late on this but I encourage everyone to run over there; the discussion is interesting and, collectively, it includes a fascinating list of resources on the history of abortion, abortion and race, and sexual autonomy as seen from a variety of times and places, and presented in a variety of media (the rock-opera version of a 19th-century German play about the link between lack of sex ed and unplanned pregnancy sounds . . . wild – and I had no idea there was a whole list of early silent movies on the same topic!). Now I’ve got a lot more reading to do! So do you.