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.





Where was I?

29 12 2011

No work, not enough work, too much work, work.

That’s been the last six months. Nowhere near enough money, even with too much work (really blew it on this last freelance job—shoulda charged double), but now things to be evening out: three courses for the spring, half-time admin work for a local-international organization.

I have some idea of what I’ll be doing with the teaching, no clue on what exactly I need to do with the admin work, but hey, I’ve gone from clueless to clue-full before.

~~~

Hey, I’ve got some a few new readers! HI!

Thanks for poking your head through my window! I’ll try not to slam it down on your noggin’. . . .

(And yes, I’ll return the favor and check out your blogs as well, now that I have the time to do so.)

~~~

I really hate not knowing things.

The problem, of course, is that the more I learn, the more I learn what I don’t know. Frustrating, that.

And embarrassing. Before I embarked on my jaunt through the European medieval period, I knew nothing about this history. Nothing.

Oh, something about the break with the Eastern Church in the 11th century, and Luther in the 1500s, but I couldn’t have told you the difference between the Renaissance and the Enlightenment, or between the various emperors and the pope.

Yeah, it was bad.

So now I’m learning stuff (yay!), but I’m running up against the parameters that I had initially set for this project. It was conceived as an investigation of intellectual history, with not much room for social (writ large) history, but I’m too much of a materialist to dismiss the conditions (see below) under which these ideas were generated and spread.

This is a very long way of thanking petefrombaltimore for his suggestions in reading.

Yes, a project like this can sprawl out over any boundaries set—hence my initial attempts at capturing only intellectual history—but sometimes the most interesting bits are discovered in the spillage.

Anyway, I just finished Peter Gay’s The Enlightenment and am now on Diarmaid MacCulloch’s The Reformation; I may then mix in some close-up histories, as well as tackling some of the primary sources.

Can’t say I’ve yet gotten anything solid on the late-margins of modernity by poking around in the early margins, but I am still poking along.

~~~

Got my first round of applause for teaching in. . . ever?

It was for my bioethics course, a class which was terrible the first time I taught it (at another university), pretty good the first time I taught it here, and now, well, good. I’ll continue to tweak it as I go along, but I’ve got a solid set-up which should hold for at least another few semesters.

It’s much easier to keep teaching the same thing over and over—all that prep work is already done—but I get antsy. I don’t think there’s a perfect syllabus or course (see: not a Platonist), so after a certain number of repetitions I overhaul the course to try to capture something missing from the previous go-around.

It’s not always better, and almost always requires adjustment, but it keeps me thinking.

Anyway, the applause.

It was common at UW-Madison to applaud professors at the end of the semester. Most of my classes were large lectures, so the performative aspect of teaching was more apparent than in seminars, but classes were similarly large at Minnesota, and I don’t recall the students applauding professors there.

It’s nice, both to applaud and be applauded. I liked that I could show my appreciation for a good professor (or lack thereof with tepid clapping); it seemed to signal that there was something more going on in that lecture hall than a contractual transmission of information from instructor to user.

The best professors gave us knowledge far and beyond that necessary for a good grade: they gave us an appreciation for the wonder of knowing.

I don’t know if that’s what my students were applauding. I work hard to tamp down my urge to overwhelm them with my words—as the person who constructs the syllabus and leads the discussions, I already have great, if indirect, influence on how they approach the subject—but on this last day of class I gave them a concentrated shot of my approach to bioethics.

I started with a truncated version of the epistemology/ontology/practical lecture, zeroing in on the significance of being (or Being, if you please) in one’s understanding of practical ethics. I then moved on to Hannah Arendt’s distinction between human nature and the human condition, namely, that while we cannot with any certainty know our nature, we can approach our condition.

And the most basic of our conditions are that we are biological beings, we are social beings, and we are mortal beings. We may be more than this, I noted (spiritual, philosophical, etc.), but we are damned-near-incontestably conditioned by our biology, our relationships to others, and the fact that we are born and will some day die.

This matters to bioethics, I argued, because any ethics which does not take account of these conditions cannot be of any practical worth.

(You might think that this would be so obvious as to be banal, but it is not.)

I can’t tell you that consequentialism or deontological ethics or casuistry or any other way is the correct approach, I said. We need standards to keep us from justification-by-convenience, to force a critical appraisal of our actions, but, pace our conditions, we have to allow deviation from those standards: the rules are to serve the human, not the human, the rules.

Finally, I said, circling back around, this is where I center my ethics, on the matter of  human being. What makes us who we are, and what we could become? It’s not that our abilities have to be unique among species, but we should think about ourselves, as humans, in how we approach one another.

We don’t have to be heroes, I observed. It’s not about pulling someone out of a burning car or tackling the bad guy or dodging bullets; it’s about recognizing one another as humans.

And then I told the story of a group of people in a small town in Wisconsin who decided to hold a funeral for an unknown woman who had been found, murdered, in their town. She wasn’t one of their own, and would never know what had been done for her, but through the donations of the funeral home and money raised for a plot and marker, and in the service at the cemetery, these people did in fact claim her as one of their own.

There was nothing heroic in this ordinary act of burying the dead, but by taking care of this dead woman’s body, they recognized her as one of them; they demonstrated their humanity in their recognition of her humanity.

We can take care of one another, I said. Our ethics ought to be centered on how we take care of one another.

They seemed to like that. I didn’t expect the applause—I thought I had gone too far—but even if I had, they didn’t seem to mind.

It was nice.

~~~

As a coda, I’ve consolidated my earwig approach to teaching (“I want this stuff to bother you for the rest of your lives”) into a line stolen and adapted from Serenity:

I aim to trouble you.

It’s not me, really, who can do this, but I can bring the trouble of politics and theory and ethics to my students, and hope that it disturbs them a good long time.





Between the pen and the paperwork

12 09 2010

I finally did it.

After clearing out the 4 boxes and separating the recorded from the unrecorded articles, I piled up all the recorded articles  until I figured out what to do with them.

All that work—years worth of work—and the one, great, broken promise that those articles collectively represented sat in my small hallway, just outside of my bedroom. For months.

Yesterday, I went through the stacked meter of them one last time, pulled out a few to offer to my bioethics students, and carried the rest to the recycling bin. Today they were gone.

I still have about another foot left; these are the articles to be entered into my database and then, like the others, taken away. And there are still the hard copies of all those Human Genome Reports, the reports from DOE and NIH and NHGRI and OTA, along with some number of articles that I couldn’t quite part with; perhaps by the time I move again I’ll have figured out how to toss these, as well.

It’s not that big of deal, I tell myself. All of this is available online, either through the CUNY library system or, if I ever remember to join the Wisconsin Alumni Association, through the UW library system. It’s all still there, not gone at all.

But it feels like waste: a waste of paper, a waste of a career. All of this work I gathered (or which was gathered for me—thanks R.!) was to have led me further into an academic life, one in which I built a political theory of bioethics, taught medical and graduate students, participated in colloquia and conferences, and secured myself inside a tenured professorship.

Didn’t happen. Obviously.

I held on to those articles, nonetheless, never quite sure of when I might—might—need them again. After all, I’m still teaching, and who knows when that Theoretical Medicine or Human Gene Therapy or Philosophical Nursing piece might be exactly what I need. I once needed them, or at least, once thought I needed them; so who knows. . . .

I know: I don’t. They’ve been a kind of heavy security blanket, boxes of files I’d carted with me from Montreal to Somerville to (storage locker to storage locker in) Brooklyn. I’m done, I said, as I refused to get rid of all that with which I was done.

So about a year ago I decided it was time. I did nothing. Then I said, Hey, I have a file of all of those articles, so it’s not like I’m losing access to everything. I did nothing. Then I disinterred them from the boxes, sorted through them, piled them a meter high in the small hallway outside of my bedroom. Where they sat. Until yesterday.

It felt good to get rid of the clutter. I have pack-ratish tendencies, but I love the relief of unburdening myself of unnecessities.

It just took awhile to admit that these thousands of pieces of paper were a part of those unnecessities.





(Almost) No comment

30 06 2010

“The challenge here is . . . to see what could be done to restore this baby to the normal female appearance which would be compatible with her parents presenting her as a girl, with her eventually becoming somebody’s wife, and having normal sexual development, and becoming a mother. And she has all the machinery for motherhood, and therefore nothing should stop that, if we can repair her surgically and help her psychologically to continue to grow and develop as a girl.”

Pediatrician Maria New, in a 2001 presentation to the CARES Foundation, a ‘nonprofit organization committed to improving the lives of families and individuals affected by Congenital Adrenal Hyperplasia.’  Girls affected by CAH have been prenatally exposed to higher-than-normal levels of androgens, and can lead to ambiguous genitalia; there may—emphasize may—also be a link to bi- and homosexuality.

New has been experimenting—without any institutional review board approval or the usual experimental controls—on pregnant women, dosing them with the steroid dexamethasone. Notes Alice Dreger, Ellen Feder, and Anne Tamar-Mattis in a recent Hastings Center Bioethics Forum post quote another paper by New & her colleague Saroj Nimkarn:

“Gender-related behaviors, namely childhood play, peer association, career and leisure time preferences in adolescence and adulthood, maternalism, aggression, and sexual orientation become masculinized in 46,XX girls and women with 21OHD deficiency [CAH]. These abnormalities have been attributed to the effects of excessive prenatal androgen levels on the sexual differentiation of the brain and later on behavior.”

Dreger et. al. note that ‘It seems more than a little ironic to have New, one of the first women pediatric endocrinologists and a member of the National Academy of Sciences, constructing women who go into “men’s” fields as “abnormal.”’

(h/ts: Andrew Sullivan, Dan Savage, the Bioethics Forum)








Follow

Get every new post delivered to your Inbox.

Join 1,268 other followers