Sufficient Scruples

Bioethics, healthcare policy, and related issues.

August 4, 2014

Scriptwriters Use 10% of Their Brains

by @ 1:12 PM. Filed under BioFlix, Biotechnology, General, General Science, Personhood, Research Issues

No doubt most readers are familiar with the old urban legend about how humans “only use 10% of our brains”. It’s embarrassingly dumb (the most vital organ in the body – and the one responsible for the extraordinarily high rate of death in childbirth, due to its large size, evolved to be 10x larger than it actually needs to be?; and how do we determine just what percentage is being used?), but it persists. (I once attended a lecture in which the speaker seriously insisted that “Albert Einstein used 20% of his brain.”) It returned last week in the form of Lucy, an undisciplined sci-fi action thriller directed by Luc Besson, starring Scarlett Johansson as an ordinary human who is fortuitously accelerated to using larger and larger percentages of her brain until she transcends reality itself.*

In a kind of manic defiance of science-fiction convention, Besson makes no attempt to make the basic factual premise of his movie even sound like it could be true, and fills much of the plot development with shootouts and a truly inspired extended car chase/crash scene. But he is so wedded to the notional groundwork of the film that he includes a numerical readout of the percentage of brain use Johansson achieves at each point in the plot, repeated House-style digital animations of synapses and molecules in action, and an honest-to-god full-length formal lecture from a scientist, complete with slides and a Q&A session. The result is a mess, with unnecessarily pretentious overtones, but still kind of fun.

SPOILER ALERT [Spoilers Below the Jump]

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October 7, 2009

Low-Significance Sample Sizes: An Ethical Loophole?

by @ 6:28 PM. Filed under Access to Healthcare, Biotechnology, General, Medical Science, Provider Roles, Research Issues, Theory

The Huffington Post today breaks an original story on a long-running scandal at Columbia University Hospital, in New York, regarding lack of informed consent on a risky blood-volume-expander study. Heart-surgery patients were recruited into a study involving a new formulation of a volume expander that had been known to cause severe bleeding in its existing form; minimal information was provided in the consent form, some patients did not speak English, some were recruited in the ER under stressful circumstances, and the hospital IRB apparently did not adequately review the existing literature indicating the level of risk potentially involved. (Frustratingly, the story does not say what stage this experiment was conducted at, but it appears to have been a Phase I trial.)

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 than would be expected by chance in such a group of patients.

There are a couple of real problems with this.

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

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

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

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

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

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

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

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

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

March 14, 2009

The Reversal That Isn’t

by @ 11:46 AM. Filed under Biotechnology, General, General Science, Healthcare Politics, Personhood, Reproductive Ethics, Research Issues, Theory

Just once, I wish we could have a debate over an important political issue that wasn’t entirely shaped and determined by sheer stupidity and ignorance from the right wing. Today will not be that day.

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

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April 17, 2008

Ask the Ethicist: Animal Testing

by @ 7:57 PM. Filed under Ask the Ethicist, Autonomy, Biotechnology, General, Healthcare Politics, Medical Science, Personhood, Research Issues, Theory

tgirsch of Lean Left (and my own blogfather!) writes:

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

 


  

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April 9, 2008

Chicken Petard: Have It Your Way

by @ 11:54 AM. Filed under Biotechnology, General, Global/Community Health, Medical Science, Personhood, Research Issues, Theory

I really loathe PETA, for lots of good reasons.

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

Make your own!

March 20, 2008

Obama and Black Distrust of the Health Professions

by @ 5:22 PM. Filed under Access to Healthcare, Autonomy, General, Global/Community Health, Healthcare Politics, Medical Science, Provider Roles, Research Issues

I have posted elsewhere on my reaction to Obama’s speech on race, and conservative reactions to it. But yesterday’s column by Michael Gerson of the Washington Post moves me to comment here specifically on the provocative remarks about AIDS that have been quoted in this controversy, and their implications for the larger questions that must be faced by this country.

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.

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March 13, 2007

Blog Against Sexism II: Sexism Still a Health Issue

by @ 3:40 PM. Filed under Access to Healthcare, Autonomy, General, Global/Community Health, Healthcare Politics, LGBTQ Issues, Medical Science, Personhood, Provider Roles, Reproductive Ethics, Research Issues, Sex, Women's Issues

“Wendi Aarons” contributes an open letter to the McSweeney’s collection:

AN OPEN LETTER TO
MR. JAMES THATCHER,
BRAND MANAGER,
PROCTER & GAMBLE.

February 6, 2007

Dear Mr. Thatcher,

I have been a loyal user of your Always maxi pads for over 20 years, and I appreciate many of their features. Why, without the LeakGuard Core™ or Dri-Weave™ absorbency, I’d probably never go horseback riding or salsa dancing, and I’d certainly steer clear of running up and down the beach in tight, white shorts. But my favorite feature has to be your revolutionary Flexi-Wings. Kudos on being the only company smart enough to realize how crucial it is that maxi pads be aerodynamic. I can’t tell you how safe and secure I feel each month knowing there’s a little F-16 in my pants. . .

Have you ever had a menstrual period, Mr. Thatcher? Ever suffered from “the curse”? I’m guessing you haven’t. . . .

Last month, while in the throes of cramping so painful I wanted to reach inside my body and yank out my uterus, I opened an Always maxi pad, and there, printed on the adhesive backing, were these words: “Have a Happy Period.”

Are you fucking kidding me? . . .

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March 8, 2007

Blog Against Sexism Day: Sexism as a Health Issue

by @ 4:08 PM. Filed under Autonomy, General, Global/Community Health, Healthcare Politics, Medical Science, Personhood, Provider Roles, Reproductive Ethics, Research Issues, Sex, Theory, Women's Issues

Today is International Women’s Day, and for that reason also Blog Against Sexism Day. I want to use the opportunity to take notice of the degree to which sexism is the root of many healthcare ethics issues affecting women, or, to put that another way, how much of women’s health issues arise from or are shaped by sexism and gender oppression.

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March 4, 2007

The Island of Lost Nightmares

by @ 10:55 PM. Filed under Autonomy, BioFlix, Biotechnology, General, Medical Science, Personhood, Provider Roles, Reproductive Ethics, Research Issues, Sex, Theory, Women's Issues

[NB: I began this review just after the movie came out, almost 15 months ago, and never finished it. Finally, sitting around this weekend, sick and procrastinating, I decided to get it off the books. Here it is, for whoever's still interested.]

The 2005 techno-thriller The Island hides a ham-handed anti-biotech message amidst its helicopters, gun battles, and explosions of various kinds. It trots out some of the standard “clone army” cliches, but goes beyond this, in places literally taking its dialog directly from the religious-right’s anti-science talking points. It fills a certain niche in the long line of biotech-nightmare morality plays, but with a particularly preachy, and notably slanted, take.

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August 8, 2006

Cutting Off the Long Tail

by @ 4:09 PM. Filed under Biotechnology, General, Global/Community Health, Medical Science, Provider Roles, Research Issues, Theory

DB, of the eponymous “Medical Rants”, makes a good point about rare diseases:

The problem with Lemierre’s Disease is that it represents a “long tail” disease. Most sore throats are viral or due to streptococcal disease. At least we thought that until recently. Evidence from 2005 in two articles suggests that the organism thought responsible for most Lemierre’s Disease – Fusobacterium necrophorum – may cause as much as 10% of pharyngitis. . . .

For the past 30 years, the infectious disease community has worked to decrease the use of unnecessary antibiotics. They have assumed that group A beta hemolytic streptococcal infection is the only pharyngitis cause which needs “necessary antibiotics”. They have assumed that group C and group G streptococci do not need antibiotics. They have excluded the possibility of unknown bacterial infections. Now it appears that Fusobacterium necrophorum may indeed be an “unknown bacterial cause” of pharyngitis.

What can we do about the Long Tail?

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August 7, 2006

Friendly Fire in the Monkey Wars

by @ 4:28 PM. Filed under General, Personhood, Research Issues, Theory

There seems to be some sort of multi-way dispute taking place between the extreme animal-rights activists, the really extreme animal-rights activists, and those who are actually taking care of animals. In much the same way as the vegan/vegetarian dispute over arificial meat, the animal lovers are carrying on the fine tradition of progressives letting the perfect be the enemy of the good by turning on one another for docrinal incorrectness before they can accomplish anything.

Plus there’s the two dead chimps and a body chained to a laboratory door, but that’s the least of things.

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August 2, 2006

RU-486: The Deadliest Abortion Remedy That’s Safer Than Any Alternative Including Pregnancy

by @ 3:51 PM. Filed under Access to Healthcare, Autonomy, General, Global/Community Health, Healthcare Politics, Medical Science, Provider Roles, Reproductive Ethics, Research Issues, Sex, Women's Issues

Right-wingers have been beside themselves over a small cluster of deaths from toxic-shock-like syndrome, caused by infection by certain specific microorganisms, in patients who had obtained medical abortions using RU-486 or a similar preparation. Specifically, there have been 4 such deaths from 2003 – 2005, plus one previously; the most recent 4 all involved women in California who had been given an “off-label” vaginal suppository for Mifepristone Misoprostol (one of the two drugs used in the most-common medical abortion procedure), as opposed to taking it orally. These similarities prompted concern among health officials; the American College of Gynecology, which had endorsed the off-label usage, convened a study panel on the issue, and Planned Parenthood stopped using the vaginal-delivery method (which is otherwise more comfortable, easier, and more effective than oral delivery). The anti-choice contingent, however, of course began trumpeting the incidents as “proof” that all medical abortion was “unsafe”.

This “proof” suffers somewhat from certain facts: (a) no clear cause of the toxic syndrome in these cases has ever been determined; (b) the medication has been used safely, orally and vaginally, by over half a million women, as compared with only 5 deaths; (c) the death rate for medical abortion – as for every other form of early- to mid-term therapeutic abortion – is lower than that for childbirth, making abortion in general, and RU-486 in particular, the best choice for women from a safety perspective. Now, the results of ACOG’s review of the situation show that this safety differential favors RU-486 even more than was previously known.

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July 31, 2006

Disability: Care Without Cure

by @ 4:55 PM. Filed under Access to Healthcare, Autonomy, BioFlix, Biotechnology, Disability Issues, General, Healthcare Politics, Medical Science, Personhood, Provider Roles, Research Issues, Theory

There was some head-squeezin’ taking place over my recent claim that many disabled persons believe “life with a disability is no more to be denigrated than life without one”. It’s just obvious to many people that having a “disability” makes your life objectively worse than otherwise, and presumably makes you objectively less happy than you would be without the disability. (A particularly stark example of this took place in an infamous encounter between utilitarian ethicist Peter Singer and disability activist Harriet McBryde Johnson, who uses a wheelchair, in which he insisted – against her objections – that having a “disability” was simply objectively worse than having some mere life difficulty such as being a victim of prejudice. I have always wondered at this in Singer, who, though controversial, is not usually unempathetic – at least, he feels chickens’ pain pretty intensely.) Seeing the disabled as “the disabled” makes it very hard not to respond to them in a way that foregrounds both the disability (rather than the person) and the observer’s interpretation of its significance.

This is an especially strong intuition for progressives for whom “helping the needy” is both a natural inclination and an inherent good (implicitly requiring that “being needy” is less good than not having a need, whereby one is “helping” by removing the need). Yet many people with disabilities would deny both that disability is necessarily an objective harm and that it necessarily makes them unhappy. Simultaneously, they are accutely aware of what is difficult for them that is not for those who do not have their disability, and many seek whatever aid is available – including medical treatment – to lessen that difficulty. Grasping this dichotomy is an important part of bringing disability into the range of human norm, and “the disabled” into the community of caring that progressives seek to build.

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July 24, 2006

Quote of the Day

by @ 12:47 PM. Filed under Access to Healthcare, Biotechnology, General, Healthcare Politics, Medical Science, Personhood, Reproductive Ethics, Research Issues, Sex, Theory, Women's Issues

From Frank Rich’s column yesterday:

That the administration’s stem-cell policy is a political fiasco for its proponents is evident from a single fact: Bill Frist, the most craven politician in Washington, ditched the president. In past pandering to his party’s far-right fringe, Mr. Frist, who calls himself a doctor, misdiagnosed the comatose Terri Schiavo’s condition after watching her on videotape and, in an interview with ABC’s George Stephanopoulos, refused to dispute an abstinence program’s canard that tears and sweat could transmit AIDS. If Senator Frist is belatedly standing up for stem-cell research, you can bet he’s read some eye-popping polls. His ignorance about H.I.V. notwithstanding, he also knows that the facts about stem cells are not on Mr. Bush’s side.

[emphasis added]

Yep.

Hat tip: Guerrillawomen.

July 19, 2006

Who’s Repugnant Now?

by @ 2:23 PM. Filed under Biotechnology, General, Healthcare Politics, Medical Science, Research Issues, Theory

There’s apparently a bit of a dust-up brewing among vegetarians over the possibility of “cultured meat” – the lab-grown muscle tissue slabs that generations of sci-fi writers have assured us we’ll all be chomping in the near, sterile and tasteless, future. Such products are now nearing marketability, but the super-veggies and the mere-veggies can’t agree on whether they’re a green and ethical end-run around farmed animal flesh, or an unholy combination of Matrix-style technoslavery and the horror that is ham sandwiches (I’m not making this up).

What’s interesting to me about the debate is that it mirrors so precisely – down to the same buzzwords and some of the same quotes - the liberal/conservative debate over biotechnology and human enhancement. Intriguingly, in this case some of the more radical vegetarians are taking the position of the most conservative bioethicists. But there is also a pro-technology position that takes very much the same attitude toward engineered meat products that most bioethicists do to stem cell research or body enhancement, and brings in people from across the contentious spectrum of animal-rights advocates.

I find that heartening. It also provides a fascinating look at the ways certain divisions between attitudes and values can play out across relatively small, as well as grand-scale, issues of biotechnological impact.

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July 17, 2006

Two Cultures?

by @ 8:41 PM. Filed under Autonomy, General, Global/Community Health, Healthcare Politics, LGBTQ Issues, Personhood, Provider Roles, Reproductive Ethics, Research Issues, Sex, Theory

The word is now going out from last week’s Bioethics & Politics conference, organized by Glen McGee at the Alden March Institute in Albany. (I am so sick that I couldn’t attend!) Wesley Smith’s take on it is interesting. He was a prominent representative of the conservative side at the meeting, and participated in a panel discussion. He comments that he views the field of bioethics as a kind of public policy debating ground, in which competing societal visions vie for social influence:

I suggested that (macro) bioethics [bioethics "which tries to impact public policy, culture, and the methods by which {clinical} bioethics is conducted"] is not a discourse and not a matter of bioethicists being “neutral arbiters” of complex moral dilemmas. Nor, is it a profession, as there is no specific training required to become a bioethicist, no state licensing, no professional discipline, etc. Rather, mainstream bioethics is a political and social movement, and like all such movements, seeks to implement policy based on a distinct ideology. . . .

The cause of the divide is fundamental: Mainstream bioethicists reject the intrinsic value of human life and instead have embraced personhood theory. Those of us perceived to be in the other camp, accept the intrinsic value of human life. This divide is too wide for the two sides to reach accommodation. Thus, we will always be in conflict.

But, this is good. These conflicts are how democracies decide important issues. Moreover, we will not decide how it all turns out. The people will through our democratic institutions. Thus those of us in the fray owe it to society to vigorously and energetically debate these matters. But how we do that is important. The people have a right to make informed decisions based on accurate information.

Without accusing Smith of being disingenuous, it seems to me there is a great deal of that is both wrong and highly politically convenient (to the conservative side) in these remarks.

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June 28, 2006

Trujillo Waves the Big Stick at Stem-Cell Researchers

by @ 10:37 PM. Filed under General, General Science, Healthcare Politics, Medical Science, Personhood, Provider Roles, Reproductive Ethics, Research Issues, Sex, Theory, Women's Issues

Roman Catholic Cardinal Alfonso Trujillo has announced that anyone who participates in research that involves the destruction of an embryo – specifically, stem-cell researchers – is liable to excommunication from the Catholic church. This is apparently an expansion of existing Catholic doctrine regarding abortion providers. (Trujillo, you may recall, is the clown who released a lengthy report, quickly demonstrated to be scientifically false in almost every respect, concluding that condoms do not help prevent AIDS.)How much impact the excommunication policy will have remains to be seen. Trujillo’s justification for it, however, is more worrisome.

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June 5, 2006

Coming Soon: The “Defense of Non-Mutant Marriage” Act

by @ 9:35 PM. Filed under Access to Healthcare, Autonomy, BioFlix, Biotechnology, Child-Rearing, Disability Issues, General, Global/Community Health, Healthcare Politics, LGBTQ Issues, Medical Science, Personhood, Provider Roles, Reproductive Ethics, Research Issues, Sex, Theory, Women's Issues

Saw the X-Men movie this past week, and was struck by how explicitly the “biological deviance” theme was brought out in the plot. Of course, that is the main driver of plot tension throughout the three movies (and to some degree in the original comic books, I gather, though I haven’t read them). But, even more so than in the first two movies, the third installment delves into the bio-politics of “normalcy” and prejudice, in interesting, though somewhat complicated, ways.

It’s a juicy subject for a worthwhile discussion, and a welcome sign in these days of otherwise unbridled bigotry and repression.

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May 24, 2006

Ambien “Cures” Persistent Vegetative State?

by @ 2:33 PM. Filed under Autonomy, Disability Issues, General, Healthcare Politics, Medical Science, Personhood, Provider Roles, Research Issues, Theory

There is much buzz about a just-released report in the clinical journal Neurorehabilitation, which reports a case study of three patients, reportedly diagnosed with long-term persistent vegetative state, who were returned to full consciousness for a number of hours with doses of zolpidem, the medication in the sleeping pill “Ambien”. Clinicians and ethicists are warily interested; the “pro-life” blogosphere, of course, is uncritically beside itself over the news:

End the Madness: PVS is reversible or misdiagnosed [Pro-Life Blogs]

PVS is reversible and often misdiagnosed [HyScience]

Important News: Drug ‘Reverses’ Vegetative State  [BlogsforTerri]

Rise and Talk [Premature Terminal Delivery]

Holy Cow! Patients in PVS Awakened by Sleeping Pill [Wesley J. Smith]

etc.

The Terri Schindler Schiavo Foundation has already demanded a moratorium on terminations of treatment for all patients in PVS on the strength of this report, as has their easily-misled former spokesperson, Pamela Hennessy.

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May 15, 2006

We Own Your Diagnosis, and We’re Not Letting It Go

by @ 1:31 PM. Filed under Access to Healthcare, Autonomy, Biotechnology, Child-Rearing, Disability Issues, General, Healthcare Politics, Medical Science, Provider Roles, Reproductive Ethics, Research Issues, Sex, Theory

Glen McGee reports on this development in genetic diagnosis: England’s HFEA (national assisted-reproduction policy-making body) has finally agreed to authorize pre-implantation genetic diagnosis (“PIGD”) for some known cancer-linked genes (apparently BRCA1 & 2), but the genes in question are patented by a commercial corporation, Myriad, who flatly refuse to license the testing. So the regulatory barrier has been removed, but it is still illegal to perform tests which, presumably, patients want, and that could give them knowledge of a child’s predisposition to breast or ovarian cancer, because a commercial license-holder has decided unilaterally not to allow it.

I have blogged previously on the dangers of patents for ordinary genome sequences; this seems to be as stark an example as you could ask for. Basic information about people’s health status and prognosis is being withheld from them, deliberately, by an uninvolved third party acting under property rights law, of all things. Are people’s values and freedom ever going to be taken seriously in the healthcare arena?

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May 12, 2006

Sex, Birth Control, and EvoPsych

by @ 3:54 PM. Filed under Autonomy, General, General Science, Personhood, Reproductive Ethics, Research Issues, Sex, Theory

Psychologist David Barash makes a welcome, and very overdue, point in an interesting Op-Ed in the LA Times: the well-documented decline in birthrate, and the rise in voluntary childlessness in Western cultures, not only does not conflict with a theorized evolutionary-psychological drive to reproduction, but is an expression of the fundamental freedom from evolutionary pressures that gives human nature its unique qualities.

In traditional evolutionary theory, reproductive success is all; those who die with the most kids win. Evolutionary psychology and sociobiology put this in more complicated perspective – altruism, kin selection, and all that – but it was still understood that getting your gametes over the hump, as it were, was the goal of life. This makes voluntarily non-reproductive lifestyles – whether homosexuality, delayed reproduction (with its risk of failure), or plain “childlessness by choice” – seem positively unnatural, and thus, in the naive fallacious naturalism that so often characterizes the right wing, that much more immoral. “Contracepting”, or not having kids by whatever means, becomes not merely religiously irritating to those of the familiarly thin skin, but somehow perverse, an attack on the species imperative to survive and prevail. Or so it may seem.

Barash defends sex for its own sake (a stance the more pathetic for its boldness in this benighted day):

For more than 99.99% of their evolutionary history, humans haven’t had the luxury of deciding whether to reproduce: simply engaging in sex took care of that, just as eating solved the problem of nutrition. But then something quite wonderful arrived on the scene: birth control. Because of it, women (and men) can exercise choice and, if they wish, save themselves the pain, risk and inconvenience of childbearing and child-rearing, indulging themselves rather than their genetic posterity.

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May 11, 2006

Yet Another New Bogus “Disorder”

by @ 11:25 AM. Filed under Child-Rearing, General, Healthcare Politics, LGBTQ Issues, Medical Science, Reproductive Ethics, Research Issues, Sex, Theory

The bioethically-oriented religious right has a strange history of inventing imaginary disorders with which to accuse or disparage people whose lives or behavior they disapprove of – or to scare others out of behavior they might choose if left to their own devices. Examples include the pretended “post-abortion trauma syndrome”, as well as the repeatedly-disproven “link” between abortion and breast cancer. There is also the bizarrely counter-factual harping on the dangers of contraception and abortion, never presented in comparative context, which would demonstrate them both to be vastly safer than an unwanted pregnancy. And there is a lot of weird nonsense heard about pornography, masturbation, television shows, magazine covers, and whatever other source of titillation pushes the right’s always-armed sex-panic buttons.

Beyond abortion and women’s sexuality, though, without doubt the one issue that prompts more purely delusional pseudo-scientific spewing is the question of homosexuality – its source, its practice, and its consequences. “Answers” to the befuddling question what “causes” homosexuality are legion. It will surprise no one to discover that James Dobson, purveyor of so much amusing right-wing bloviating, has discovered yet another such theory – one he claims is “being discussed in the child development clinics and in the universities throughout the country and around the world”, none of which seem to have heard of it.

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April 28, 2006

Moral Development and Nativist Morality

by @ 6:58 PM. Filed under General, General Science, Personhood, Research Issues, Theory

There has been a flurry of attention recently to the notion of a “poverty of the stimulus” argument in moral development. Briefly, the “Argument from the Poverty of the Stimulus” (“APoS”) was advanced by Noam Chomsky in support of his theory regarding an innate (“nativist”), universal human grammar, on which children draw as they learn language. (The argument has a formal structure, but it basically consists in the observation that the specific grammar of the particular language the child is exposed to is underdetermined by the stimulus the child receives – the sentences the child hears from others. Given a limited set of inputs, a variety of possible grammatical structures capable of producing those sentences could be deduced, so the child cannot learn one particular language from that input; instead, the child learns the one language that is capable of generating the set of sentences it has heard and which is possible under the set of universal grammatical rules hardwired into its brain. When it has heard enough sentences, only one plausible grammatical structure will be available from within the universal grammar the child possesses, although many possible grammars could still have been deduced if that constraint were not present. The existence of the universal grammar is required to make accurate language acquisition possible in spite of the poverty of the stimulus, and therefore the fact that language is acquired at all is evidence for such a universal grammar and therefore the truth of the nativist theory of language.) The moral parallel is the idea that there is a universal, nativist moral sense. Just as the existence of hardwired language rules allows the child to generate new sentences, despite its exposure to impoverished language stimuli previously, so the nativist moral sense allows the child to make moral judgments regarding situations it has not already encountered. Just as the nativist language theory is a refutation of the empiricist school of language – holding that language skills are acquired essentially by behaviorist-style mimicry – the nativist moral theory is a refutation of the claim that moral judgments are culturally determined.

Adam Colber of Neuroethics & Law Blog has a good post, referencing an interesting recent journal article on the topic. Kyle Swan of Pea Soup had a more detailed discussion of the subject about 18 months ago (I just found the link after being “stimulated” by Colber’s post), which provides some excellent speculation and a very insightful comments thread. He also provides a useful bibliography, and links to a preceding series of posts on moral realism. There’s some excellent work going on over there at Pea Soup.

But what does this all cash out to?

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April 24, 2006

This Post Was Not Tested on Animals

by @ 12:58 PM. Filed under Biotechnology, General, General Science, Global/Community Health, Healthcare Politics, Medical Science, Research Issues, Theory

I’m not on the animal-rights bandwagon (though I think there are interesting questions to be asked about intelligence in some primates). I generally have no strong objections to those who are, though I think they’re on the wrong track. I am offended by irresponsible groups like ALF and PETA, and think their illegal acts should be strongly punished, and I am equally offended by false accusations often raised against animal experimenters (though I also agree there have been lapses that should themselves be corrected and punished). In general, I think that the animal-rights activist community is as believable, mature, and responsible as the anti-choice activist community – which is sad, because in many ways their issues and arguments are in fact better grounded.

However, I’m always amused by and contemptuous of the labels on “green” foods and products self-righteously proclaiming that “this product was not tested on animals”. (Today I tried some shaving cream, from a cosmetics company run by two gay men, which was reassuringly labeled “tested only on boyfriends, not animals”. Great product, by the way.) There are only two things that can mean, and they both are predicated on the assumption that you’re an idiot.

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April 21, 2006

Vatican Maintains Unconscionable, False, Stance Against Condoms

by @ 5:02 PM. Filed under Access to Healthcare, Autonomy, Biotechnology, General, Global/Community Health, Healthcare Politics, Medical Science, Provider Roles, Reproductive Ethics, Research Issues, Sex, Theory, Women's Issues

The Vatican appears to have launched an offensive against condom use to prevent AIDS, based on grossly distorted claims (and apparent ignorance of facts) regarding their efficacy against HIV transmission. The degree of falsity is so breath-taking, and the stakes so high, that the official Brazilian National Program on HIV/AIDS labeled it a “crime against humanity“. On the bright side, one highly-placed church official has shown a tiny bit of sanity on the matter.

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