Kathleen Cranley Glass, 1942-2014

20 04 2014

Kathy was kind. She was smart, and she was tough.

But what I will remember, first, is that she was kind.

She was in charge of the Biomedical Ethics Unit at McGill during my postdoc, and while I think I spoke to her on the phone before moving to Montréal, I hadn’t met her before then. I was going to fly up to Montréal to look for an apartment, but she’d assured me that I could find a place upon arrival.

In all my years of knowing her, that might have been the only time she gave me bad advice. (Well, that and suggesting that if I liked Montréal, I’d probably like Boston, too.)

In every other way, however, Kathy was as fine a guide into bioethics and Québec as I could have hoped for. She and her husband Leon invited me over for dinner more times than I could count—in fact, I stayed with them a good chunk of the time I was looking for an apartment—and took me hiking outside of the city, and to various festivals within it.

She also tried to convince me that Montréal bagels were as good as New York bagels, but that didn’t take. (Montréal bagels are fine—and, honestly, given how pillowy so many NY bagels have become of late, certainly the better size—but a bit too sweet for my taste.)

Mostly, though, I remember the many long conversations with her in her office, first in the old building on Peel, then in her corner office in the building on the other side of the street. I’d have been in my office at the end of the day and have wandered over to hers to say goodbye, then end up staying for an hour or two as we talked about ethics and genetics and politics and music and memory.

She was generous with her time and with herself.

Again, she was kind as she worked her way through her and my thoughts, but it was through these long conversations, as well as in our various BMU meetings, seminar, and colloquia, that her tough-mindedness revealed itself. It was so easy to skip past the basics, but Kathy always returned to them, and to the basic necessity of patient and subject protection.

That was Kathy’s abiding concern: how to take care of people, be they patients at the Children’s Hospital, where she served as a clinical ethicist, or when writing about subjects in clinical trials. She and her colleagues (including Stan Shapiro and Charles Weijer) returned again and again to the necessity of clinical equipoise in research trials, especially in regards to trials of psychoactive medications.

All too often psychiatric patients would be—are—offered fewer subjects-protections than other similarly seriously ill patient-subjects: instead of testing new treatments against current ones, researchers test the investigational drug against. . . nothing. Not only will this skew the results by inflating the effects of the drug—which is bad enough—but subjects who might otherwise benefit from current treatments are denied them, and thus, suffer as a direct and entirely predictable result of their participation in the trial.

This, as Kathy would note, is a textbook definition of unethical research.

She and Stan focused on psychiatric patients, but Kathy’s research ranged widely across bioethics and included considerations of genetic and stem cell research. She worked with Bartha Knoppers at the Université de Montréal and Françoise Baylis at Dalhousie in trying to come to grips with the then-novel human embryonic stem cell research.

Bartha and Françoise can be aggressive in argumentation—I am like them in that respect—but Kathy was not one to be flattened by fast-rolling words. She was too acute a thinker.

This is what I missed, at first. Her kindness, her gentleness, was so immediately apparent, that I made the mistake I too often made: that a softness means weakness.

She was soft; she was also sharp. There was no contradiction.

That is a lesson I’m still learning.

I am so sorry that I will never be able to tell her how much she meant to me, personally and intellectually. I am a better thinker for having known her, and a better teacher for having taught alongside her. She is, and will remain, a touchstone. I will miss her for the rest of my life.

She died at home, among her family, April 12. Rest in peace, Kathy.

Thanks to Jonathan Kimmelman for tracking me down and notifying me of Kathy’s death.





Can you hear me, cont.

8 05 2013

One more small bit on normal:

Some bioethicists who worry about enhancement don’t worry about normalization; some embrace enhancement precisely because they think it offers a way out of normalization.

Neither position makes sense insofar as enhancement and normalization are linked.

The enhancement-worriers fret about new techs or practices taking us away from a baseline normal human, yet don’t wonder about the creation of that baseline normal human. The enhancement- embracers think other-than-normal is just dandy, yet don’t consider that enhancement can lead to new normals.

This is not, I must say, the position of all those who write on enhancement and normalization; one of the things I like about Parens’s book Enhancing Human Traits is that it includes plenty o’ pieces by those who weigh both enhancement and normalization.

Me, I think the real issue is normalization, such that my concerns about enhancement are precisely that they might become the new norm. Enhancement leads to questions; normalization feeds off forgetting.

I think forgetting is a bigger problem for humans than questioning.





Can you hear me

7 05 2013

I blew my students’ minds today.

No, not anything brilliant on my part: I brought up an issue in my bioethics course that I’ve mentioned in previous courses—had thought I’d mentioned previously in this course—and a number of them lost it.

I told them that there were deaf people who didn’t think there was anything wrong with being deaf, and furthermore, they’d like you to keep your cochlear implants and whatnot to yourselves, thankyouverymuch.

That did not compute.

Now, the backdrop for this moment of brain splatter was a discussion of social coercion, normalization, enhancement, disability, and morality (among other things). Somewhere in this discussion I noted that devices which are promoted as aiding the disabled might be more about assuaging the discomforts of the non-disabled. This was one of Anita Silver’s points in her essay “A Fatal Attraction to Normalizing” (in Enhancing Human Traits, ed. by Erik Parens), as exemplified by the decision of the Canadian government to push children affected by thalidomide into prostheses and forbidding them to roll or crawl. “The direction of resources to fund artificial limb design and manufacture rather than wheelchair design was influenced by the supposition that walking makes people more socially acceptable than wheeling does.”

A number of them did not like where I was going with this. So how far do we go to accommodate those people, they said. If we’re the majority, shouldn’t they, you know, have to adapt? Are we just supposed to design everything around them?

One of them even complained about ramps: Why should I have to go around and around if I just want to take the stairs?

I pointed out that ramps rarely replace stairs, but are instead treated as an addition, meaning that the stairs remained. I also noted that crappy design is bad for everyone. The building in which the class is held, Carman Hall, is a terribly designed building—you have to go down a flight of steps just to enter the building—and suggested that it’s just possible that being forced to think about accessibility for, say, wheelchair users might just lead to designs which are good for everyone. Curb cuts, I noted, are useful for those pushing strollers or, say, 3 weeks worth of laundry in a cart.

Besides, I noted, at some point we’re all, if we’re lucky, going to get old and frail, so designing for access is, in effect, designing for everyone.

In any case, my mind was a little blown by their sense that accommodating people who came in a model unlike themselves was unfair.

Okay, now back to their shorted neural circuits. Deafness, I noted, is a condition, and some who are deaf are also a part of the Deaf community. These Deaf members see themselves as distinct, not disabled, and their community as worth preserving; as such, they see cochlear implants as a way of eliminating members of that community. Furthermore, since cochlear implants are imperfect, not only will these deaf people not gain the full range of sound as hearing people, they will never gain full status as hearing people: they will also be lesser “normals” than full and “normally” Deaf.

But why would they want to be deaf? they asked. Doesn’t that limit them? Why wouldn’t they want cochlear implants?

Well, I noted, we’re all hearing in our class, so if we lost our hearing we would, in fact, experience it as a loss. But while we might be able to see only the limitations of deafness, they see other capacities enabled by it.

They were dubious. What about contacts, one of the students asked. I’d be blind without my contacts. J., I said, you would not be blind, you would simply have bad sight, which is more akin to being hard of hearing than being deaf.

(That said, it was a provocative question: is their a Blind community akin to the Deaf community? And what would be the implications of that? What are the implications of a lack of a Blind community?)

I’m used to students gasping a bit at the thought that Deaf people might not have a problem with their own deafness, but I can usually get them to consider that the problem with deafness is the problem that hearing people have with deafness. No, I’m trying to force them to accept the Deaf argument—I’m not quite sure what to make of it myself—but I do want to crowbar them out of their own defaults, their own unthinking attachments to normal.

There are streams within bioethics which maintain their own unthinking attachments to normal, as well as those who prefer to poke a stick into the concept. I’m more in the latter camp (big surprise), but as I think normalizing is impossible to avoid, my approach is simply to unsettle, and be unsettled by, the normal, and go from there.

The students weren’t so much unsettled as shocked, and given that shocking can lead to reaction rather than reflection, I guess I shouldn’t be shocked that they held ever tighter to their own normality.





Here’s a man who lives a life

23 01 2013

I’m a big fan of science, and an increasingly big fan of science fiction.

I do, however, prefer that, on a practical level, we note the difference between the two.

There’s a lot to be said for speculation—one of the roots of political science is an extended speculation on the construction of a just society—but while I am not opposed to speculation informing practice, the substitution of what-if thinking for practical thought (phronēsis) in politics results in farce, disaster, or farcical disaster.

So too in science.

Wondering about a clean and inexhaustible source of energy can lead to experiments which point the way to cleaner and longer-lasting energy sources; it can also lead to non-replicable claims about desktop cold fusion. The difference between the two is the work.

You have to do the work, work which includes observation, experimentation, and rigorous theorizing. You don’t have to know everything at the outset—that’s one of the uses of experimentation—but to go from brain-storm to science you have to test your ideas.

This is all a very roundabout way of saying that cloning to make Neandertals is a bad idea.

Biologist George Church thinks synthesizing a Neandertal would be a good idea, mainly because it would diversify the “monoculture” of the Homo sapiens.

My first response is: this is just dumb. The genome of H. sapiens is syncretic, containing DNA from, yes, Neandertals, Denisovans, and possibly other archaic species, as well as microbial species. Given all of the varieties of life on this planet, I guess you could make the case for a lack of variety among humans, but calling us a “monoculture” seems rather to stretch the meaning of the term.

My second response is: this is just dumb. Church assumes a greater efficiency for cloning complex species than currently exists. Yes, cows and dogs and cats and frogs have all been cloned, but over 90 percent of all cloning attempts fail. Human pregnancy is notably inefficient—only 20-40% of all fertilized eggs result in a live birth—so it is tough to see why one would trumpet a lab process which is even more scattershot than what happens in nature.

Furthermore, those clones which are successfully produced nonetheless tend to be less healthy than the results of sexual reproduction.

Finally, all cloned animals require a surrogate mother in which to gestate. Given the low success rates of clones birthed by members of their own species, what are the chances that an H. sapiens woman would be able to bring a Neandertal clone to term—and without harming herself in the process?

I’m not against cloning, for the record. The replication of DNA segments and microbial life forms is a standard part of lab practice, and replicated tissues organs could conceivably have a role in regenerative medicine.

But—and this is my third response—advocating human and near-human cloning is at this point scientifically irresponsible. The furthest cloning has advanced in primates is the cloning of monkey embryos, that is, there has been no successful reproductive cloning of a primate.

To repeat: there has been no successful reproductive cloning of our closest genetic relatives. And Church thinks we could clone a Neandertal, easy-peasy?

No.

There are all kinds of ethical questions about cloning, of course, but in the form of bio-ethics I practice, one undergirded by the necessity of phronēsis, the first question I ask is: Is this already happening? Is this close to happening?

If the answer is No, then I turn my attention to those practices for which the answer is Yes.

Cloning is in-between: It is already happening in some species, but the process is so fraught that the inefficiencies themselves should warn scientists off of any attempts on humans. Still, as an in-between practice, it is worth considering the ethics of human cloning.

But Neandertal cloning? Not even close.

None of this means that Church can’t speculate away on the possibilities. He just shouldn’t kid himself that he’s engaging in science rather than science fiction.

(h/t: Tyler Cowen)





Don’t forget your books

16 01 2013

Yes, I am going to comment on David Brooks’s syllabus and no, I am not going to make fun of it.

Easy stuff first: attendance and participation–20%; two 2500-word essays, 40% each. That’s not far from my 300-level bioethics course: 20% A&P, 20% science quiz, two research papers, ~2500 words, 30% each.

No, what caught my eye was the reading list: Look at all of those books!

General of the Army: George C. Marshall, Soldier and Statesman” by Ed Cray

“Leading Lives That Matter: What We Should Do And Who We Should Be” by Mark Schwen and Dorothy Bass

Pericles of Athens and the Birth of Democracy by Donald Kagan

“Augustine of Hippo” by Peter Brown

“How to Live: Or A Life of Montaigne in One Question and Twenty Attempts at an Answer” by Sarah Bakewell

Reflections on the Revolution in France by Edmund Burke

“The Long Loneliness: The Autobiography of the Legendary Catholic Social Activist” Dorothy Day

The Irony of American History by Reinhold Niehbuhr

“Thinking Fast and Slow” by Daniel Kahneman

The Hedgehog and the Fox by Isaiah Berlin

I’d rather have the students read Pericles (via, say, Thucydides—and hey, let’s toss in the Melian dialogue while we’re at it) than read about Pericles—ditto Augustine and Montaigne—but if the Kagan, Brown, and Bakewell books include large chunks of these thinkers’ words, it’s defensible.

I like the Dorothy Day (of course), think de Tocqueville would have been better than Burke (and, perhaps, Niehbuhr), and while I have the Kahnemann book on my to-read list, I wonder what he’ll do with it. Berlin, eh, but perhaps fitting.

I also think  “The Character Course” would be a better title than “The Humility Course”—I think a fair amount of the snark is due to the title itself (the other part, of course, due to Brooks himself)—but it’s the content that matters, and, again, the content is defensible.

That’s not a major endorsement, of course, but its minimalism isn’t meant as a slam. It’s hard to put together a syllabus, especially the first time, and what’s on the page and what’s in the classroom are not always in sync. And that were I to teach a course on, say, political character, I’d probably keep Pericles (and the Melians) and Augustine and Day, add Plato and Machiavelli (of course), perhaps Voltaire, probably something from Foucault’s History of Sexuality, focusing on ethos and self-care. Something from Mandela. Portions of the Nixon tapes, perhaps. Some James Baldwin.

At least, that’s what I’d like to offer; I wouldn’t actually be able to do so: There is no way I could assign that many texts. My previous chair actively discouraged me from assigning too much reading (too much for a 200-level course: more than 25-50 pages a week), although the current chair might not have a problem with my overloading 300-level students.

More to the point, the students wouldn’t do the reading. I got my 100-level American government students to read the text by assigning near-weekly quizzes, and by requiring them to pull from the supplemental book (journalistic essays) for their take-home mid-terms. I’m wondering how to get my 100-level contemporary issues students to read their short-short pieces before class, and am tentatively planning to require them to hand in a brief summary of the readings before each and every class.

In other words, if they’re not being graded directly on the readings themselves, they will not do them.

I recognize this with my bioethics class, and while there is a fair amount of reading on the syllabus, I’d bet that more than half the class doesn’t bother to do all of the reading. Why would they? No final exam.

Given that, I’ve concentrated less on the answers the various authors provide and more on the questions. They won’t remember the readings, may not need most of them for their papers, so if I want them to get anything out of the class, I have to find something that will stick to the roofs of their minds.

(Another image I’ve used? Questions-as-earwigs.)

I ask them questions, I poke their answers, turn them around and push ‘em right back at ‘em. Oh, you think this is settled? Well then, what about that? What, you say that that has nothing to do with this? What about p, q, r? If you approve of red, why not orange? On what basis do you disapprove of triangles?

I can do this because these kinds of troubles are inherent in the material itself; when I half-joke that I aim to trouble you, it’s less about what I come up with sui generis than what I can point to in the rumpled textures of, say, enhancement technologies. Having ranged over this ground for some years, I’ve become, to switch metaphors, pretty good at kicking up the artifacts half-buried in the dirt—and showing them how to do so, as well.

It’s be great if my students would read everything that I assign because they truly want to learn everything they can about the subject, but that ain’t gonna happen.

So I work around that, and try to get them to care enough to learn, anyway.





All hail Leigh Turner!

22 03 2012

Well, goddamn.

Leigh Turner has been fighting the good fight regarding the dubious stem cell “treatments” offered by Celltex, recently sending a letter to the FDA requesting that they investigate the firm.

Celltex has responded by sending a letter to Eric Kaler, president of the University of Minnesota alleging misdeeds by Turner, and ending with the following:

Please inform us at your earliest convenience whether Associate Professor Turner’s February 21st letter, on the University’s letterhead, was authorized by the University. If it was not authorized, please inform us of what steps the University will take to disclaim any sponsorship of the Turner letter, retract the letter, remove the letter from the internet, prevent further distribution of the letter, and prevent recurrence of this type of action by Associate Professor Turner (or any other University professor). We wish to limit legal liability to those responsible for the wrongful acts and appreciate your cooperation in that regard.

Yeah, no.

Now, at this point I must admit that I know Leigh Turner—I worked with him at McGill—and like and greatly respect him. Leigh is a methodical thinker and researcher and, unlike your erratic and absurd host, not at all prone to popping off.

I also have to say that I found out about this SLAPP-suit at Carl Elliott’s blog, that I know, like, and greatly respect Carl, AND that I know, like, and greatly respect a number of the people who have also written to the FDA in support of Leigh.

(I also admit that I disclose these connections not just for reasons of honesty but because I think these people are terrific and am glad I know them.)

Anyway, read through the comments at Carl’s post and you’ll understand what I mean by “all hail Leigh Turner!” Note, for example, his patient and relentless responses to the evasive comments and personal attacks levelled by Laurence B. McCullough’s of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Leigh responds to every single point, respectfully requests additional information, and does. not. let. up.

Did I mention Leigh is methodical?

Okay, he does let one snipe go: McCullough at one point accuses Leigh of  “American provincialism”;  Leigh is Canadian.

In any case, Leigh has set a standard on how to respond to evasion, misdirection, and intimidation: know your stuff and don’t back down.

It’s a good standard for a hothead like me to follow.

h/t for Turner letter to FDA: Carl Elliott; for Celltex letter to the U of M: Ed Silverman at Pharmalot





Testing, one, two

20 02 2012

Rick Santorum got one (kinda) right.

The bottom line is that a lot of prenatal tests are done to identify deformities in utero, and the customary procedure is to encourage abortions.

That is exactly why a lot of prenatal tests are done—to identify any possible problems—and, yes, if the problems are sufficiently grave, an abortion may follow.

I’d argue about the word “encourage”—doctors are unlikely to be so explicitly directive in their discussion of test results—but I wouldn’t doubt that a fair amount of pressure is brought to bear on the woman (and her partner) to decide quickly, not least because abortions become more complicated the later in the pregnancy they’re performed.

And in fact, prenatal testing, particularly amniocentesis — I’m not talking about general prenatal care—we’re talking about specifically prenatal testing, and specifically amniocentesis, which is a procedure that actually creates a risk of having a miscarriage when you have it, and is done for the purposes of identifying maladies in the womb. And which in many cases — in fact, most cases physicians recommend — particularly if there’s a problem — recommend abortion.

Again, this is less clear. “Non-directive counseling” is the watchword in genetics counseling, and while OB/GYN’s have not necessarily undergone such training, the mantra of let-the-patient-decide has pretty well seeped into the ethos of American medicine.

“Doctor’s orders” ain’t what they used to be: since the 1970s, patient autonomy has been elevated to one of the main principles of biomedical ethics, a principle reinforced by the legal system. Doctors may and do recommend a particular course of action, but having been imbued with the notion of respecting the ability of the patient to make her own decisions and mindful of the possibility of tort action if their recommended solution goes south, they are far more likely to dump information into the patient’s lap and say “your decision”.

Okay, that’s a bit severe, but it is the case that patients expect more information and that courts will hold a doctor liable if she withholds such information from them; failure to perform standard medical tests and inform the patient of the results can itself result in lawsuits.

This is the real dynamic behind the pressure—and oh, yes, there is pressure*—for pregnant women to undergo prenatal testing.  Blood tests and ultrasounds are routine in all pregnancies in the US, and amniocentesis is strongly recommended for high-risk pregnancies, a procedure which Santorum, correctly, notes puts the fetus at risk for miscarriage. To decline such tests is to open oneself to repeated (incredulous and/or hostile) questioning of that decision.

But here is where Santorum begins to go off track:

One of the things that you don’t know about ObamaCare in one of the mandates is they require free prenatal testing. Why? Because free prenatal testing ends up in more abortions and, therefore, less care that has to be done, because we cull the ranks of the disabled in our society. That too is part of ObamaCare — another hidden message as to what president Obama thinks of those who are less able than the elites who want to govern our country.

Let’s unpack this, shall we?

First, those who perform the test, those on whom the tests are performed, those who pay for the test,  and those who regulate insurance are not all the same person. The doctor orders the test because it is standard medical practice and because she agrees that this standard medical practice is, in fact good, insofar as it gives both her and her patient more information. The patient generally (although not always) wants this information, so she, too assents to the screenings.

Those who pay for the test do so as a result of pressure from doctors to pay for good medical care and because, yes, testing can lead to lower costs to the insurer down the road. These lower costs may result from treatments prior to birth to forestall greater problems after birth and, yes, from women deciding to terminate pregnancies which are at high risk of resulting in the birth of a child with a disability. Over 90 percent of fetuses which test positive for Trisomy 21, the chromosomal abnormality responsible for Down Syndrome, are terminated.

There was, in fact, a case in which an insurer told a couple that if they did not terminate an affected pregnancy, any medical expenses associated with the birth and the child would not be covered. The couple sued, and won. Given that many couples will chose voluntarily to end such pregnancies, however, such coercion is generally unnecessary.

Finally, there are the insurance regulators, who have to balance concerns of patients, doctors,  and insurance companies; given that there is little conflict between these different groups (although there may be with some individual patients and doctors) about the desirability of the tests themselves, encouraging or even mandating partial or full coverage of such tests is non-controversial.

This basic dynamic was set into play long before Barack Obama became president, and it is highly unlikely that the (equally highly unlikely) presidency of Rick Santorum would alter this in any way.

Oh, he might try to force insurers to drop coverage of prenatal care, but both Congress and the courts would be hostile (for a variety of reasons) to any such executive orders. The testing regime, for better and for worse, has become entrenched in American medicine.

Let us now consider the most offensive aspect of Santorum’s screed against screening: he doesn’t consider the role of the women (or couples) themselves. Once again, they are pure victims of a dark techno-liberal conspiracy, unable to make any decisions for themselves and unworthy of consideration as actors in their own lives. They must be protected from Obama, liberals, doctors, and, of course, themselves.

That is Santorum’s own not-so-hidden message to the rest of us: he doesn’t consider us able to make the most basic decisions about our own lives.

I hate the term “sheeple”, but it certainly seems as if that’s how Santorum, the would-be shepherd, views the American people.

~~~~~

*Questions regarding prenatal screening have long preoccupied those who work in bioethics; a good introduction to some of this work is Prenatal Testing and Disability Rights by Erik Parens and Adrienne Asch.








Follow

Get every new post delivered to your Inbox.

Join 1,306 other followers