Medical Humanities Blog

Joint Ethics Conference: Deadline for Papers 12/1

Though the notice of the conference has been out for some time, I just saw it myself recently:

The University of Toronto Joint Centre for Bioethics is excited to host the Joint Ethics Conference of the 18th Canadian Bioethics Society Conference and the 3rd International Conference on Clinical Ethics and Consultation from May 30th to June 3rd 2007. With the theme, “Ethics Matters,” this Joint Ethics Conference aims to showcase the work of a wide variety of scholars and professionals exploring how and why ethics matters in health care across different philosophies, disciplines, cultures, and methodologies. The Joint Ethics Conference is an opportunity to highlight the innovative and important work that is being done nationally and internationally in the field of bioethics. The conference will be of particular interest to professionals, academics, administrators, policy makers, and students with an interest in bioethics and health care. Interested members of the general public are also welcome to attend.

The deadline for abstracts was extented to 12/1.  Here is the page containing information on abstract submission, and I would like to specially note that the Joint Conference appears particularly receptive to submissions from students.

Thoughts on the Ghost Map

So, I finished reading the Ghost Map, and I thought I might offer just a few pithy comments.  Please note this is by no means a full-on book review (thankfully, as end-of-semester deadlines are barrelling down upon me).

Overall, I found the book fascinating and enjoyable to read.  The writing is lively and informative, the pacing is excellent, and Johnson deftly weaves the narrative of John Snow, the physician and epidemiologist principally responsible for proving the waterborne nature of cholera.  Snow's analysis (along with significant contributions from Reverend John Whitehead, more on hm below) and testimony before the London Board of Governors prompted them to order removal of the handle of the Broad Street pump (the well was a primary vector of infection). 

In one particularly chilling passage, Johnson explains how investigation established the index case as the infant of Sarah and Thomas Lewis, of 40 Broad Street, whose soiled clothing had been washed in water that was then dumped into a cesspool that seeped into the well's groundwater.  In the latter stages of the epidemic, as the cholera burned itself out, Thomas Lewis became ill, and Sarah Lewis again washed his soiled garments in water that she deposited in the cesspool in their basement.  Johnson draws the frightening conclusion:

If Snow had not persuaded the Board of Governors to remove the handle when he did, the disease might have torn through the neighborhood all over again, the well water restocked with a fresh supply of V. cholerae.  And so Snow's intervention did not just help bring the outbreak to a close.  It also prevented a second attack.

(187-88).

One theme of Johnson's that ought to be of particular interest to the medical humanist is his insistence that there are really two protagonists in the events of 1854-1855.  John Snow's dogged scientific acumen, his engineering intelligence, and his general brilliance were certainly integral, but so to, argues Johnson, were the efforts of Reverend Henry Whitehead.  Whitehead was a completely familiar and important figure in the social life of the Broad Street neighborhood at the time.

Johnson details that Whitehead initially rejected Snow's theory, until Whitehead began to conduct door-by-door investigations (something Snow could not have done because he lacked the connections and familiarity that Whitehead had with the neighborhood), the results of which convinced him of the single common factor in virtually all of the afflicted families and homes (Broad Street water).  Johnson's point is that even Snow's genius alone might have been insufficient to convince the authorities of the incommensurability of the deeply entrenched miasma theory with the evidence.  It took Whitehead's "local expert[ise]" to render Snow's theory of waterborne contamination, so airtight (no pun intended) that even the authorities could not show that the miasma theory fit with the facts equally well.

Why is this of import for the medical humanist? I think it shows the importance of practices, for one.  Snow's brilliance might not have helped usher in the germ theory of disease had he confined himself to a laboratory, without any actual knowledge or investigation of the local practices and customs that literally fed and cultivated the epidemic.  Whereas Petrarch and the humanists were concerned with the cultivation of virtue in people's daily lives and practices, Whitehead's significant contribution was to examine how the disease "was cultivated" in context of those daily lives and practices.  In both cases, those local practices and contexts are a crucial part of the overall endeavor.

Snow's story, then, demonstrates the relevance of those practices to scientific discourse.  Health really does seem to be, in some sense at least, both a public good and a social phenomenon.  Health surely seems to be a practice, which is partly why the last decade has seen more attention to what has been termed "public health ethics," partly because of concern that the historically individually-focused aspects of bioethics have not facilitated due attention to the ethical and policy concerns of health in the truly public sense.  It seems difficult to deny the inextricable link between public and individual health; after all, if vaccinations and immunizations were nonexistent, it seems safe to suggest that the burden on physicians treating individual patients would increase (to put it mildly). 

In any case, Johnson's book is both interesting and important from the medical humanities perspective.  The fact that one of Johnson's primary academic interests has been to examine the ways in which cultures respond to epidemics confirms the significance of practices and social contexts for the narratives and the history he examines.

My only real source of disagreement with Johnson is not in the history that is his principal focus, but in his conclusion, where he extrapolates from that history regarding the current threat of epidemic disease on the planet.  While I do not necessarily disagree with his contention that the specter of nuclear detonation may be far more worthy of our fright, I do not share Johnson's optimism on the possibility that science may someday relatively soon conquer infectious disease.  He suggests:

We have already seen amazing advances in our understanding of the way genes build organisms, but the application of that understanding -- particularly in the realm of medicine -- is only starting to bear fruit.  A decade or two from now, we may possess tools that will allows us to both analyze the genetic composition of a newly discovered bacterium and, using computer modeling, build an effective vaccine or antiviral drug in a matter of days.

(249).  Though I am obviously no scientist, I find much to disagree with here.  First, it may be significant that as a trade name, what was once referred to as "gene therapy" is now generally termed "gene transfer," mostly to remove the obvious therapeutic misconception that attends the former (disasters like the Jesse Gelsinger case likely influenced this move).  The point is that we are far enough away from being able to use gene technologies as a therapeutic regimen that it was deemed more accurate to give such research the more reserved and sober term, "gene transfer."

Thus, one might well quibble with Johnson's point that the application of genetic understanding is medical practice is starting to bear fruit now.  A great deal more work is necessary before we can even begin to actually use genes as therapy.  Perhaps all Johnson means is that our understanding of genes informs clinical practice.  But this is both undeniable and trivial, in the technical sense.  Accordingly, I'm not entirely sure what Johnson means here.

Moreover, one might look at our current difficulty in making an effective vaccine for HIV (it has proven extremely difficult to make vaccines for retroviruses) and see it as an obvious counterexample to Johnson's suggestion that we may only be a decade or two away from being able to quickly construct a vaccine for a heretofore unknown virus.  We have been working on a vaccine for HIV for almost two decades now with relatively little success.  I am not at all convinced that the near future holds the bright prospects for immunology that Johnson seems to envision.

Nevertheless, these differences strike me as relatively minor in terms of the overall narrative and themes that Johnson traces.  All in all, I found it a successful book, as well as highly enjoyable to read.

Thoughts?

Return, Apologia, & Forecast

I am terribly sorry to have been away from this weblog for so long, but an overseas trip had been planned for some time, and blogging proved more difficult from the remote venue than I had imagined.

I am back (and jet-lagged), and posting should resume its normal frequency beginning this evening or tomorrow at the latest.  I finished reading Steven Berlin Johnson's The Ghost Map, and will share my impressions (not a full-length book review).  This week will also feature a Literature Review, and I hope to get around to compiling the list of bioethics links ASAP.

Again, I apologize for the paucity of blogging over the last ten days, but I do not foresee any similar slowdown in the near future.  As always, thanks for reading and commenting.

Mind and Body

Michael Cohen over at CAMLAW Blog brings news of a lawsuit filed by a

New Jersey

couple against

Aetna

for the latter's refusal to cover the cost of their daughter's treatment for anorexia. 

Aetna

reasoned that the patient's anorexia was not "biologically based."  Says Cohen,

The Times [article] notes that "insurers have balked at covering mental illnesses that they say do not have a proven physiological basis," and that this case exemplifies "what advocates for the mentally ill call longstanding inequities in insurance coverage for psychological ailments."

Cohen rightly bemoans the poor understanding such a rationale implies for the mind-body connection.  I take it a bit farther, insofar as I am sympathetic to the view that even the phrase "mind-body connection" is misleading because it may imply that two discrete, autonomous entities are connected.

In fact, I think the mind is the body (though, pace John Searle, it is imperative to note that the mind is not only the body; I am not advancing physiological reductionism).  Of all the great mischief that modernity has caused, reification of the mind-body duality is among its most problematic legacies.  Though the distinction is widely discredited in scholarship and theory, its cultural influences remain evident, I think.

In my own primary area of interest, pain, the mind-body duality is alive and well.  The gate-control theory of pain certainly seems to implicate a distinction between the biochemical pathways of the sympathetic and parasympathetic nervous system, and the processing centers of the central nervous system and ultimately, the brain.

The mind-body duality is, despite some concerted efforts, alive and well enough.  The fact that Aetna probably believed, with some justification, that its grounds for denial of coverage merited that denial (and the risk of subsequent litigation), may suggest just how hale the distinction is, no matter how dubious it seems to many.

Light Blogging

I apologize in advance for what will probably be light posting through the Thanksgiving holiday.  I am headed overseas and will not always be around a computer.  There will be several posts through the holiday, after which regular posting will resume.

Comments will be approved during this time, though they may take awhile to appear.

Women, Bioethics, & Blogrolling

I was trolling around the fine web site www.bioethics.net, and noticed a blog post on the Women's Bioethics Blog.  The latter is the blog of the Women's Bioethics Project, which looks exceedingly interesting (not to mention important). 

One quick question: the group's FAQ plainly seems to include some of the concerns voiced by feminist scholars, both within and without bioethics, yet the actual term "feminist" is nowhere to be seen.  This may be trivial or of little interest, but I wonder if there was any conscious decision to avoid using the term "feminist," and if so, why.  (Of course, I recognize that it makes little difference substantively, but a central insight of feminist (and other critical) scholars has been that one should generally avoid underestimating the power of naming.  The question thus may not be entirely irrelevant.  Or it may be.  Thoughts?)

Incidentally, I have begun to realize that a new blogroll is needed to compile some worthwhile bioethics links.  I was initially reluctanct to include any links to any website that is not directly concerned with the medical humanities, but, in so doing, I neglected my own belief that the lines between health policy, law, bioethics, and the various disciplines and fields of inquiry of the medical humanities will not submit to such stark demarcation.

Hence, look for an updated blogroll in the next 24 hours.   

Link Aggregating

Professor Solum has several good links worth pointing out:

First, Andrew Hyman and Charles Silver, law professors at University of Illinois and University of Texas, respectively, have uploaded onto SSRN a copy of their latest article, entitled Medical Malpractice Litigation and Tort Reform: It's the Incentives, Stupid.  Here is the abstract:

Health care providers and tort reformers claim that the medical malpractice litigation system is rife with behaviors that are irrational, unpredictable, and counter-productive. They attack civil juries, asserting that verdicts are skyrocketing without reason, are highly variable, and bear little or no relation to the merits of plaintiffs' claims. They complain about patients, arguing that the few with valid claims sue rarely, while the many who receive non-negligent treatment sue all the time. They attack greedy lawyers, alleging that they rake in obscene profits by routinely filing frivolous complaints.

Many of the preceding claims are facially implausible. The medical malpractice liability system is an enormous market whose principal trading partners - trial lawyers and liability insurers - are sophisticated, economically-oriented repeat players. They run the system, and they have the knowledge and incentives to select efficient means to accomplish their respective ends. Given this backdrop, their behavior and the behavior of the system they administer should not be random, or even particularly hard to explain. Nor, given the absence of market power and barriers to entry, should attorneys earn more than market-driven returns on the services they provide.

Most of the preceding claims are also inconsistent with empirical studies of the medical malpractice liability system. These studies depict a system that is stable and predictable, that sorts valid from invalid claims reasonably well, and that responds mainly to changes in the frequency of errors and the cost of dealing with them. The system does have a number of pathologies, however, including its loading costs, the snail's pace at which it processes claims, and its failure to compensate patients injured by medical negligence as fully and as often as it should.

It is possible to reform the liability system to address these shortcomings, but tort reform proposals like caps on non-economic damages and attorneys fees will not do so. The goal of these proposals is to reduce insurance prices by making the system less remunerative for claimants. If implemented, these measures will predictably worsen the problem of under-compensation, and weaken providers' incentives to protect patients from avoidable perils.

Medical malpractice, understood expansively, is a crucial aspect of many different concerns of health policy, bioethics, and medical humanities.  It necessarily implicates profound questions about transparency (or, to use the economic jargon, asymmetrical information), medical error, access to care, and health insurance, to name but a few.  Thus, while the political rancor may understandably turn off some who might otherwise be interested in the issue, I suggest that the discourse, as nasty as it sometimes seems to turn, is significant for the medical humanities.

Second, the good Professor links to news of a major international conference on Ethical Theory and Moral Practice, to be held in Amsterdam in March, 2008.  The conference marks the tenth anniversary of the aforementioned journal.  Shockingly, then, the subject of the conference is the relation, if any, between ethical theory and moral practice.  The conference website includes a call for papers, as well as details on an essay competition for young scholars. 

Complementary & Alternative Medicine Law Blog

Professor Michael Cohen, practicing attorney, Assistant Clinical Professor at Harvard School of Medicine, and Assistant Professor at Harvard School of Public Health, was kind enough to notify me of the existence of his Complementary & Alternative Medicine ("CAM") Law Blog.  I've only just begun to read the blog, but I have already found lots of interesting posts there.   I find CAM both absolutely fascinating, and a topic well suited for a medical humanities analysis.

Highly recommended.

UPDATE: This post is also recommended, as Professor Cohen is therein kind enough to discuss the Medical Humanities Blog and to suggest that there is much to be gained from a dialogue addressing complementary and alternative medicine law, ethics, regulation, and health care policy in context of the medical humanities.  I agree wholeheartedly with him, as such conversation is absolutely the raison d'etre for this little blog.

New Book on History of Cholera and Public Health

Riverhead Hardcover recently released Steven Berlin Johnson's book entitled The Ghost Map.

Here is an excerpt from a L.A Times book review:

"The Ghost Map" charts the London cholera epidemic of 1854, from which Johnson extracts a saga of human ingenuity and true communal effort. Tellingly, no single savior or miracle worker emerges from the ordure. He shows how "the connectors and entrepreneurs and public characters who make the urban engine work at street level" saved the city from itself. Indeed, the seeming chaos and deep interconnectedness of urban life, the very conditions that create an epidemic, can also contribute to its cessation or cure, he writes.

Publishers' Weekly reviews it favorably here, as does the Seattle Times and Science, among others.

If you have comments on the book, you can give them directly to the author at his weblog. 

Sounds fascinating, and as someone generally interested in the history of public health, this is a must-read for me.

(H/T to Leigh Hopper at MedBlog).

Social Model of Disability

Today's entry in the Lexicon features the social model of disability.  Much of what I have to say here dovetails nicely with the entry on medicalization.

For much of the last two centuries, disability has been understood in social terms according to an allopathic medical model.  By this I mean to say that disabilty has perpetually been defined as a pathology, as a lack, as a dysfunction.  Plato argues in the Republic that one cannot define justice without experiencing injustice, and disability has generally been comprehended in terms of the lack of function that a "normal" person might enjoy.  A person whose foot has been amputated is therefore disabled because they lack the function that a "normal" person with two feet would enjoy in that foot.

Over the last several decades (or even less -- disability studies is quite a young field of inquiry), theorists have begun to challenge this medical model of disability.  They argue, instead, that disability is largely socially constructed, that it is a function of social practices and attitudes rather than actual physical impairment.  What does this mean?

Consider, for example, what the lived experience of disability would be like if every building was accessible to disabled persons, if every bathroom in every building was accessible.  What if every curb had adequate cuts for persons in wheelchairs? What if all public schools provided adequate access to interpreters fluent in sign language? What if all restaurants had menus in Braille?

The point, which to me seems undeniable as far as it goes, is that some of the lived experiences of disability are constructed by the social realities of living as a disabled person.  If, for example, every building was actually accessible to persons in wheelchairs, the limitations resulting from the person's impairment would be profoundly different.  The accuracy of this perspective is apparent in the divergent experiences of disabled persons touring countries with widely different accessibility profiles.  In Great Britain or the Scandinavian nations, for example, which generally spend much more time, effort, and $$ in enhancing accessibility, the extent of the limitations for a disabled persons is likely to very different than, for example, in the U.S. or Japan.

From this perspective, then, the conclusion is that disability is, to some extent, socially constructed rather than defined by medical assessments of impairment.  The parameters of disability are constructed by social practices, and the attitudes and conceptions that inform those practices, more so than by actual physical impairments.

This is a core aspect of the social model of disability, though there are many more features of the model that are relevant.  I will mention two.  First, one of the core features of a medical model is the "fix-it" mentality.  A person comes down with some kind of illness or injury, and seeks medical care to fix the problem.  This is uncontroversial by itself, of course.  But the fix-it mentality, many disability theorists and advocates point out, has caused a very great deal of harm.  Consider, for a moment, what the social impact could be on a person, who, since their early memories, have constantly been told that they are, in essence, less than what they should be, that they are less than whole, somehow incomplete, inferior to others who do not have the impairment(s) at issue.

I can only begin to imagine the incredible pain and damage that some such persons might experience over a lifetime of constant, often painful attempts to "fix" their problems.  Disability advocates have long referred to the realization of the harm inflicted by the fix-it mentality, and of the fact that the mentality is imposed by others (though too often internalized by the disabled person) as "coming out as disabled."  The language is intentional in its resemblance to the process of coming out for gay, lesbian, bisexual, or transgendered persons.  In both circumstances, the individual decides that they no longer will allow others to define the nature of their own impairment, that they no longer will allow their own lived experiences to be defined in terms of a lack, in terms of what they are not, in terms of "abnormality."

All of this is not to deny the profound good that comes from the fix-it mentality of the medical model in general.  If I break my arm, I seek medical care with the abiding expectation and hope that it will indeed be fixed.  My point here is that the fix-it mentality has a dark side as well, and this darkness has historically been visited most frequently on disabled persons.  The rejection of the fix-it mentality plays a part, for example, in the notorious debates over whether it is ethical to allow Deaf parents of a Deaf infant to refuse a cochlear implant on behalf of their infant.  To many, but by no means all, persons who self-identify as part of Deaf Culture, their deafness is not an impairment at all -- it is, they argue, exactly like living in a country whose language you do not speak (Deaf people obviously do possess a language [sign language]; it is just is not one most people "speak").  Accordingly, some Deaf persons see the effort to fix or correct their child's deafness as a continuation of the same rejection and invalidation of the worthiness of living as a Deaf person that characterizes the fix-it mentality.

(I am not here defending this view, but merely trying to explain my own perspective of how some of the views of parents who oppose such cochlear implants might be related to views on the social model of disability).

Historically, judgments of abnormality, of a life defined only by deficit, have had grave consequences for disabled persons.  The eugenics programs of the late 19th-early 20th century had disastrous consequences for disabled persons (the Nazis murdered an estimated 250,000 disabled persons), and the underlying view of the social worthiness of disabled persons is also evident in the properly infamous decision of Buck v. Bell, which contained Justice Holmes's notorious aphorism, "Three generations of imbeciles are enough."

Second, as mentioned in the Lexicon entry on futility, another problematic regarding the social model of disability is the relatively massive body of evidence suggesting that nondisabled persons consistently underestimate the quality of life of disabled persons.  If this is so, it is unsurprising that some disability rights advocates are most concerned about permitting nondisabled persons to make quality-of-life determinations (of futility) for disabled persons in end-of-life scenarios.  This again shows how significant attitudes towards and conceptions of disability are in constructing the lived experiences of disabled persons.

Finally, it should be apparent that the social model of disability is hardly uncontroversial.  While it seems difficult to deny that much of the lived experience of disability is informed and constructed by social practices and attitudes, more than a few disability scholars and advocates argue that to focus solely on the social aspects of disability is to ignore the physical, material impairments that also produce those lived experiences.  Other concerns include questions about the coherence of the community of disabled persons (given such wide variations in both the nature of the impairment and the attitudes towards disability among different cultures and countries), as well as the role of political activism in raising consciousness of disability and of the socialized aspects of disability.

_______________________________________________________

Bibliography:

The Disability Studies Reader (ed., Lennard J. Davis)

Claiming Disability: Knowledge & Identity (Simi Linton)

Handbook of Disability Studies (eds., Gary L. Albrecht, Katherine D. Seelman, Michael Bury)

The New Disability History: American Perspectives (eds., Paul Longmore & Lauri Umansky)

Disability & Contemporary Performance: Bodies on Edge (Petra Kuppers)

Stigma: Notes on the Management of Spoiled Identity (Erving Goffman)