Medical Humanities Blog

On Race & Medicine

The controversy that continues to swirl around race, illness, and health should be extremely important to the medical humanist.  It is difficult to imagine another constellation of issues which implicate issues of stigma, eugenics, genetics, reductionism, biological materialism, disparities, and the social determinants of health, to name but a few.  From an interdisciplinary perspective, crucial contributions to the discourse flow from anthropologists, sociologists, historians, ethicists, scientists, physicians, and critical theorists, among others.

Given some of my professional focus on disparities and the social determinants of health, the issue is inevitable, especially given the hue and cry in the culture of (science and) biomedicine over (pharmaco)genomics.

Over at the Literature, Arts, and Medicine Blog, Felice Aull has a nice post on what she terms "racial borderlands."  I have one colleague in particular who does quite a bit of work on the notion of borderlands in context of the medical humanities, and I absolutely agree with him -- and with Felice -- that the concept is helpful in illuminating some of what is at stake in thinking about race, illness, health, and medicine.  In any case, go check out Felice's post.

Call for Papers: Disability Studies & Autism

The editors of a Special Issue of Disability Studies Quarterly (one of, if not the leading American journals on disability studies) on Autism Spectrum Disorder have issued a call for papers:

We are looking for completed articles, from a disability studies perspective, on what the medical community refers to as ASD (Autism Spectrum Disorder). We are especially interested in pieces that engage the so-called “low-functioning” end of the spectrum, where increasingly those presumed retarded and lacking social awareness are writing back to the empire of science. As the field of disability studies has theorized cognitive difference, it has had to refine its cherished social-constructionist approach, making sure to account for physiological distinctiveness in the organ of sensibility, a distinctiveness that has been interpreted in a myriad of ways, most quite prejudicial. We are interested in the burgeoning neurodiversity movement, which has self-consciously resisted such prejudicial interpretations, often revealing the “science” of autism to be anything but reliable and objective. How to talk about autistic difference? How to represent it? How to convey its gifts and challenges? Who can talk about it? What role should parents play in this representational arena? What role should teachers, doctors, researchers, therapists, media entities, and academics play? What kind of interdisciplinary approaches are needed to understand, respect, and even cherish autism?

We are open to the widest array of progressive approaches and topics. The latter include, but are not limited to issues of

• race/ethnicity
• sexuality
• self-representation/autobiography
• movement and cognition
• perceptual acuities
• popular cultural representations
• internet
• blogging
• literacy
• communication
• the arts
• treatments, cures, prevention
• science/research
• eugenics
• education/inclusion
• disability rights
• employment
• perseveration, echolalia
• independence

Further information, including submission deadlines -- which the website (must erroneously?) list(s) as Jan. 1, 2008 -- are available on the DSQ website.

On the Visible and the Brain

I've discussed the importance of the visible in biomedical culture several times, particularly in context of neuroethics.  I was pleased to see that the excellent Journal of the History of the Neurosciences latest issue is a theme on Visual Images and Visualization.  The TOC is here.

(h/t H-SCI-MED-TECH listserv)

Slow Blogging

I apologize for the terribly slow blogging, but I am currently on a post-exams sojourn overseas.  Blogging to resume by the end of the week.

On Useful (Australian) Bodies

For background context, see here, in which I assess the thesis that the history of human participants research in the 20th century can be characterized as the transformation of formerly unuseful bodies into bodies that are useful to the state.

Over at Crooked Timber, John Quiggin quietly notes that

It doesn’t appear to have been covered yet by any US news sources, so I just thought I’d link to this story reporting that, in the 60s, the US military proposed to test nerve gases (Sarin and VX) on Australian troops, who were to be kept in the dark on what was going on. Amazingly, given our generally supine attitude in such matters, the conservative Australian government of the day refused.

Atomic tests conducted on Australian soil are the subject of an essay in the book Useful Bodies.  In any case, as I remarked previously, the best evidence of U.S. government activities regarding human participants research in the 20th century, makes the X-Files seem quite ordinary.

On the Very Idea of Health

Julie Gerberding, Director of the Centers for Disease Control, understands that by reducing discourse over public health policy to concerns about access, we are substantially undermining any hope of improving population health.  Speaking in an interview with USA Today announcing the launch of the CDC's "Healthiest Nation Campaign," she notes:

Health care isn't only what takes place in a doctor's office, a clinic or a hospital.

"We put way too much emphasis on treating disease rather than protecting health in the first place," Gerberding said in an interview.

As a result, the United States doesn't even muster a spot in the top 10 on rankings of nations' health. On one list it's 26th, the CDC says; on another, 47th.

Indeed.  I have noted here my wonderment that so many seem to be genuinely puzzled at how the richest nation in the world could perform so poorly in caring for the health of its population by almost any measure at all.  The answers, to me, at least, seem painfully obvious: an unjustifiable allocation of resources to treatment in comparison to those devoted to prevention and public health, and a failure to incorporate the substantial evidence base relating to inequality and the SDOH into our public health policies.  Gerberding concurs:

A main goal of the Healthiest Nation Campaign is to keep Americans healthy by integrating health into social policies across all sectors and at all levels of government, Gerberding says.

"It's basically about changing the conversation," she says. "People are talking about health care reform, but they're not really talking about health."

Today, only a nickel out of every medical-care dollar spent in the USA goes toward keeping Americans healthy, Gerberding notes. "Many countries have put more emphasis on health promotion than the United States."

Yes, this is key.  Health care reform -- construed in terms of access -- and health are not remotely equivalent.  We can and should debate the significance of the former -- and on moral grounds, it is extremely important -- but it doesn't follow that improving the former will substantially improve the latter.  Very good evidence suggests that it will not.  Moreover, Gerberding takes care to note the distinction between "prevention" in the context of screenings and check-ups, and prevention in the sense of primary prevention -- activities and policies going far back over the lifespan to early childhood development and even prenatal care:

When people talk about investing in prevention, she says, "typically what they're talking about is 'let's invest in screening for early detection of disease.' That's secondary prevention. We're not really talking about the things we need to do before we get to the doctor's office."

This is the subject of a very recent (and excellent) article by Starfield et al. in the Journal of Epidemiology and Community Health.  Barbara Starfield is among the very best researchers working on prevention and health policy, and her work merits close study.  The Abstract for the essay is here:

Over time, the definition of prevention has expanded so that its meaning in the context of health services is now unclear. As risk factors are increasingly considered to be the equivalent of "diseases" for purposes of intervention, the concept of prevention has lost all practical meaning. This paper reviews the inconsistencies in its utility, and suggests principles that it should follow in the future: a population orientation with explicit consideration of attributable risk, the setting of priorities based on reduction in illness and avoidance of adverse effects, and the imperative to reduce inequities in health. 

This is one of the better recent essays I have read on the unfortunate elasiticity that has followed the concept of prevention.  Prevention, understood in the sense Starfield et al. intend it, is too important a concept to let become so conceptually diffuse.

In any case, Gerberding cites the well-known evidence that eliminating access problems would resolve -- at best -- 25% of health disparities.  Access issues are profoundly important for moral reasons; but inasmuch as we reduce discussion about how best to improve health to such access, we are unlikely to reduce human suffering as much as we ought to.  

On Scientific Misconduct

I've mentioned Aubrey Blumsohn's Scientific Misconduct Blog here before.  Blumsohn is a both a scientist and perhaps a victim of misconduct at the same time.  This in itself is unusual because one tends to think of the scientist as the typical agent of the misconduct, at least in the ORI context.  Yet the problems arising from conflicts of interest can be anomalous, and the narratives of several researchers (Olivieri, Healy, among others) suggests that COIs can produce circumstances in which scientists can be victims of misconduct.

Over at Health Care Renewal, Roy Poses briefly recaps what happened to Blumsohn, and offers strong opinions on the subject, whose tenor I happen to agree with.  I am not particularly interested in meta discussions about the role of blogging in media and journalism, but I have often wondered myself why I perceive so little reaction to Blumsohn's story, especially with the frequently zealous protection of the rights and privileges surrounding tenure (witness the recent vibrant blogospheric discourse regarding the John Yoo situation).  In any case, at the very least, there seems ample justification for conducting an investigation into the circumstances surrounding Blumsohn's dismissal from the University of Sheffield.

Go read Poses's post.

On Normative Commitments

Frank Pasquale has a typically thoughtful post up over at CoOp, discussing what he terms "economic imperalism."  He begins:

Economics is becoming the "it" social science discipline for generalist readers seeking to understand themselves and society. Just as the modish may have turned to Freudian psychology or Parsonian sociology or sociobiology in the 20th century, they now lap up economics popularizers. This latest incarnation of social science svengalis has one great advantage over its predecessors: extraordinary facility with data and its mathematical manipulation. But as Alan Wolfe notes in his insightful review of recent books by Bruno Frey and Dan Ariely, we do well to examine closely the nature of that data, the philosophical commitments of its analysts, and the limits of its extrapolability.

I've voiced similar sentiments here on MH Blog, not because I believe that economics and data-driven research is unimportant or unnecessary, particularly when thinking about health policy.  Quite the contrary, such work is crucial.  However, if there is anything that the humanities teaches, it is that human endeavors are unavoidably normative in nature.  We are historicized, interpretive creatures, and we come to any practice -- including medicine, science, and economics -- with myriad normative commitments and philosophical beliefs that undeniably and in important ways color how we construct our methods and produce our knowledge.

Thus, the idea of "objective" evidence from data-driven, quantitative research, if such evidence is meant to imply the "view-from-nowhere," is, to borrow my favorite Wittgensteinian metaphor, akin to the ideas of doors painted onto walls.  Economics is no more or less value-based than any other human endeavor, IMO.  The fact that, in my experience, this contention is likely to be resisted so fiercely says much about our epistemic commitments. 

On Fatness, Stigma, and Popular Culture

I happened to go see WALL-E with my wife over the weekend, and we were both appalled at the prevalence of sterotypes about fat people in the movie (i.e., that they are lazy, that they cannot think for themselves, that they are totally and completely narcisstic, to name but a few that jumped out at us).

Of course, I should have figured I am late to the game, as the Fatosphere has been all over this.  I was stunned to read over at the F-Word, which first noted the potential problems in Nov. 2007, a 6.28 update noting:

This post was made during the film’s developmental stage.  WALL-E has now been released in theaters and it appears as if Pixar has considerably reworked the show since the time of this post to tone down its negative and discriminatory portrayals of fat people.

Good lord.  If Pixar actually did "considerably rework the show" to tone down its prejudicial portrayals of fat people, I shudder to think what the film looked like before they decided to appease.

The fact that the producers inserted a line about the cause of the humans' fatness being due to the effects of "microgravity" -- and hence, is 'not their fault,' itself a pernicious and troubling trope in the discourse on stigma in health and illness -- did not stop the film from linking fat people with all sorts of hoary stereotypes.

Plus, the movie wasn't even that good! Too cute by half.