Medical Humanities Blog

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.

On Income Inequality and Population Health

Orin Kerr, in response to a comment of mine on Concurring Opinions, asks:

Just to be clear, when you refer to the correlation between income inequality and health, you mean that societies with low inequality tend to have better physical health than societies with high inequality, right? If so, is the idea that they correlate with something else, or that inequality determines physical health? (And if the latter, how?)

As is my wont, I began to ramble, so I figured it would be better to hog this blog space rather than the CoOp comments:

You ask a number of pertinent questions, and I hope it's clear that there remains a great deal about the correlation that has yet to be unpacked.  But the basic idea is that, as Daniels, Kennedy, and Kawachi put in the title of their 1999 essay (turned into a 2000 book), "justice is good for your health."  Greater distributive justice -- lower socioeconomic disparities -- is not just good for the health of the less affluent, but has a demonstrable effect in improving population health even for those who sit on top of the social gradient.

Perhaps the most interesting aspect of this gradient, most directly attributable to Marmot's work, is that it is not simply the case that the wealthy are healthier than the poor.  No one doubts this.  But an impressively linear relationship tends to exist across the social gradient.  Thus the really well-off are healthier than the slightly less well-off, who in turn are healthier than the slightly slightly less well-off, and so on and so forth.

This relationship has been demonstrated in local, state/provinicial, national, and global levels, in widely different societies and cultures.  There are a number of scholars working on explaining the impressive consistency of these social gradients, which gets to your second question -- that inequality is a prime determinant of health.

Really, this idea is not altogether novel.  As I note here, Ramazzini observed the relationship between socieconomic conditions and health as long ago as 1713, and it was a prime motivation for the sanitarians' public health reforms of the late 19th-early 20th century.

But as for the specific mechanism, there are a number of theories.  In my view -- and I want to be careful to avoid privileging reductionist, scientistic explanations here -- some of the most interesting and compelling accounts tie poor health outcomes to inequality in context of the neuroendocrine system.  Basically, it turns out we're not supposed to have the fight-or-flight response turned on all the time.  Where we do -- b/c of socioeconomic conditions, for example -- we maintain very high levels of stress hormones like cortisol.  There is excellent evidence that sustained high levels of cortisol causes all manner of health problems, and is linked to just about every major chronic disease (except for many cancers) you'd care to name (CAD, CVD, diabetes, mental health problems, to name but a few).

It's particularly harmful to developing brains, which suggests a molecular reason for the evidence that really early childhood development is absolutely crucial to flourishing across the lifespan.  (i.e., lower socioeconomic status in childhood seems to produce -- and the causation here is incredibly complex and admittedly poorly understood -- what some refer to as a "cascade" of health problems, each building on the other to increase morbidity and lower life expectancy, along with a number of other poor health measures).

I guess one of your implicit questions is how wider socioeconomic disparities causes poor health even for those on top of the social gradient.  This is a really complex question, and I'm not sure there are a lot of really developed answers out there -- though I am no epidemiologist or sociologist, both of whom tend to dominate the technical work in these fields -- but one example is that even African-Americans who sit atop the social gradient by any measure (education, income, neighborhood, you name it), suffer more disease and have lower life expectancy than Caucasians in the same position on the gradient.

Nancy Krieger, among others, has advanced a theory, with (IMO) credible data that racism in and of itself, after controlling for virtually every conceivable confounder, seems to have an inimical effect on health.  Thinking about this in terms of the neuroendocrine system mentioned above may help process this idea, which, on a purely anecdotal basis, I've seen seems to generate widespread disbelief (though I'm not really sure why -- if it isn't hard to understand why systematic discrimination and prejudice might significantly contribute to higher levels of depression and anxiety, why it is to hard to believe that consistently higher levels of such problems contribute significantly to poor health outcomes over the lifespan?).

Finally, Richard Wilkinson, among others, has produced a large body of evidence showing that societies with significant income inequalities report much higher levels of violence, and that the relationship is proportional.  Also, such violence occurs within positions on the socioeconomic gradient, not just between levels.  (So domestic violence -- presumably between families and communities of similar SES is significantly higher in societies with high income inequality, in addition to what we might expect, that violence between social positions is more common in such societies).

Anyway, none of this is to suggest that all of this has been figured out and is widely understood.  As I tried to indicate in my initial comment, that so much of the relationship remains somewhat cloudy is at least partially why the correlation remains an object of such intense study across so many different disciplines.  (For example, though I'm no methodologist, I do a lot of ethics and public health policy work, and bringing this evidence to bear and thinking about the moral implications of this evidence is vitally important, IMO).  But I also don't want to suggest we are totally in the dark.  The relationship exists.  It is robust, it is persistent, and we have some interesting and evidence-based accounts of how income inequalities produce lower population health.  It's very difficult, in my view, to claim that wide income inequalities are productive of "good" population health.

Of course, none of this exhausts the normative inquiries.  What constitutes good health? How much inequality should we tolerate? How much should we encourage? If not all inequality is bad-- and I agree that it is not -- where do we draw the line?

These are obviously all viable questions.  But it's odd to me that so many seem either to reject the mountains of data suggesting, by virtually any health indicia you might care to use, the U.S. has very poor health relative to its health expenditures, or to express puzzlement at the reasons why this might be so.  This is the basic subject of Kawachi and Kennedy's book on the health of nations.

Hope this helps.

Health Wonk Review

This week's Health Wonk Review is up at Health Affairs Blog.  We made the Review, and, as always, it's worth checking out.

On Media Coverage of Health & Illness

Over at the incomparable Health Beat Blog, Maggie Mahar does an excellent job summarizing the implications of several new articles published in PLoS Medicine on the woeful state of media coverage of health care and biomedical research.

We've noted our concern with these issues on several occasions here on MH Blog.  Mahar writes:

the journal’s editors summarize  what the Health News Review has discovered over the past two years while evaluating medical stories about new products and procedures throughout the mainstream media.

“It’s not a pretty picture,” says Gary Schwitzer, the University of Minnesota School of Journalism professor who publishes the online project.

In a video linked to the Health News Review website,  Schwitzer points out that “about 65% of the time” major news organization are not telling viewers and readers how “big the potential harms” of new treatments are–or “how small the potential benefits.”

Meanwhile, about three-quarters of the stories about a new product or procedure fail to talk about how much the idea costs.  “At a time when the U.S. is spending 16 percent of GDP on healthcare, I find this unfathomable,” says Schwitzer. “No one is asking: ‘How are we going to pay for it?’; ‘Who will have access to these things’?; ‘Who’s to say that we even need some of these things?  This is what we need to discuss.”

Ultimately, “these stories are painting a ‘kid in the candy-store’ picture of US health care,” Schwitzer charges, “whereby everything is made to look terrific, risk-free, and without a price tag. Nothing could be further from the truth.”

Indeed.  In the accompanying editorial, the PLoS Medicine editors note that "the report card from HealthNewsReview.org is grim.  Most stories (62%-77%) failed to adequately address costs, harms, benefits, the quality of evidence, and the existence of other treatment options."

From a MH perspective, it's important to see that the media is a discursive process, which means that if there is a widespread practice of overstating hopes and understating fears, that practice reflects a number of social and cultural norms that converge to create a journalistic culture in which such reporting becomes standard.  As such, an important question to ask is what norms animate these practices? Especially if we want to work at correcting the purveyance of "false hopes" and "unwarranted fears" in media coverage of health care and research, it seems important to understand better why such practices are commonplace to begin with.

Offhand, I tend to think there are some strong cultural and social forces at work in general, related to the awesome legitimizing power of science, and the quasi-shamanistic role of the professional healer as salvation incarnate (the religious studies term for an ethos centered on salvation is "soteriological").  The vulnerable sick person invests so much in their professional healer, and the rescue narrative also fulfills a number of social, political, and cultural niches for the healer as well.

Thus, to understand why media coverage is often so inaccurate seems to me to require at least some understanding of the larger role medicine and science play in making meaning of suffering and in serving as the ultimate authority and legitimizer of knowledge.

Thoughts? 

On Useful Bodies

The always provocative and interesting Aubrey Blumsohn has an outstanding series of posts up at Scientific Misconduct documenting the CIA's role in performing LSD experiments on human participants after WWII, with the active participation of the pharmaceutical industry.  The series is divided into five parts and  was prompted by the recent death of Albert Hoffman, the inventor of LSD.

On the Declaration of Helsinki

These days, Stuart Rennie seems to be doing a terrific job of voicing many of my own perspectives on global ethical issues.  So why not continue to link to his posts?

His latest effort assesses the FDA's decision to abandon the ethical dictates of the Declaration of Helsinki, moving instead to the weaker protections of the Good Clinical Practices of the International Conference on Harmonization.  Notwithstanding my own skepticism about the utility of ethical codes, Rennie provides good reason for thinking the decision is quite important, if not substantively, at the very least as a signal as to current priorities in global research:

The Declaration of Helsinki has its own problems, not the least of which are problems of ambiguity in its language and limited enforceability. But even its most uncharitable critic can see that the document has an ethical backbone. What impact the FDA's decision will have on clinical trials around the world remains to be seen, but the decision would seem to encourage pharmaceutical companies to cut ethical corners when working abroad.

Indeed.  Merrill Goozner comments here.

On the Moral Imagination

An evocative phrase within the medical humanities lexicon (I know, I know, I'm way behind in this series . . . ) is the "moral imagination," which we've briefly discussed.  The idea, roughly, is that a healer's ability to imagine what it might be like to experience the illness phenomena the patient narrates is itself of moral significance.  The healer who has a better developed imaginative faculty, IMO, is that much more likely to heal the patient, as opposed to merely treat the disease.  David Henderson Slater has an excellent post underscoring the importance of the moral imagination for the physician over at the Literature, Arts, and Medicine Blog.

Excerpts:

When we see a patient in clinic, or in the operating theatre, or on the ward, we see only a tiny part of their lives. We tend to see what they want to present to us. The clinic and the ward are not real life, or only a tiny part of it. If I really want to know what life is like for my patient I have to spend hours at it - perhaps also visiting them at home (something I often do) or in the Nursing Home. That way I get a feel for the things that get forgotten in clinic- such as the long hours of inactivity, or the financial poverty of the family, and an appreciation of what is important to them - for example the religious artefacts on the walls, the family pets, the old cars littering their garden, the half finished Do-it-Yourself projects.

While narrative studies are not my area of focus within the medical humanities (I gravitate to ethics, policy, and the history of medicine & public health), there is no doubt in my mind that narrative is important academically because it is so important phenomenologically.  What I mean by that is, in Slater's articulation, the idea is that the visits between doctor and patient are merely one tiny slice of the larger stream of narratives that comprise the patient's life.  To actually understand what it might be like to experience the illness(es) that the patient is living and/or dying with, attention simply has to be given to the larger context in which the patient is living out his or her life.  As Slater notes,

But sometimes we can’t access the patient in this direct way, and sometimes we don’t notice things. Our minds and our eyes need to be trained to spot things; so does our imagination. As trainee doctors we get extensive training in physical examination. I believe we also need to train our imagination, to learn to think what life is like for others, to experience things vicariously.

Indeed.  The suggestion here is not that the healer must go out and examine how the patient lives his or her life -- although that is probably a very good idea, and seems to me to characterize some of what medical anthropologists "do" and why it might be important -- but rather that the imagination is a faculty, and can be honed and refined like any other.  And the more developed this faculty is, the more effective, IMO, the healer is likely to be.

In any case, go read the whole post, which includes some perspectives from an Oxford medical student on disability and film.

On Gene "Therapy," and the Therapeutic Misconception

Here at MH Blog, I've posted several times on the woeful state of both public and academic discourse about genetics, and the high prevalence of reductionistic views of genetic causation.  Some particularly visible critics, like Richard Lewontin, whose work on the matter should be required reading for anyone venturing to write anything at all about the ELSI of genetic science, have charged that such reductionism proliferates even among scientists.

In this context, I wanted to note the news that

For the first time, researchers have shown that gene therapy can be used to improve vision for blind children and young adults. Two new studies document the treatment of six young people who underwent the potentially groundbreaking surgery at the Children's Hospital of Philadelphia and the University of Pennsylvania and at Moorsfields Eye Hospital in London.

The BBC news article on the story notes:

His doctors were shocked at the improvement.

Professor Robin Ali, of the Institute for Ophthalmology, who led the trial, said: "To get this indication after only three patients is hugely exciting.

"I find it difficult to remember being as excited as I am today about our science and what it might achieve."

A few comments:

First, it is wonderful that the use of these techniques improved, or at least halted the degeneration, of several people's eyesight.  The amelioration of human suffering should always be recognized, validated, and lauded.  That these successes hold promise for future efforts at healing and easing human suffering and illness is obviously significant, as well.

Second, however, note the lede to the ABC News article: "for the first time."  Yes, indeed.  One of the most obvious datum for the prevalence of the therapeutic misconception is the continued usage of the term "gene therapy" in place of the more accurate (PDF) "gene transfer research."  Gene transfer research has, thus far, been long on promise and short on therapeutic results.

In and of itself, of course, there is nothing wrong with this.  Most worthwhile scientific endeavors feature a very great deal of failure before any kind of success.  Yet to term gene transfer research "gene therapy" is to beg the question of its therapeutic nature.  The entire question, for anyone who wishes to practice any kind of evidence-based healing, is whether there is good evidence for believing a given intervention will be therapeutic. 

As such, I continue to have difficulty understanding why both lay and professionals alike continue to refer to this kind of research as "gene therapy."  This datum suggests just how deep and widespread is the therapeutic misconception, especially when we have some reason to believe that gene transfer research poses no insignificant amount of risk to the human participants.

The March/April 2008 issue of the Hastings Center Report features an article written by Paul Gelsinger (Jesse's father) and Adil Shamoo, querying whether there is good reason to believe that human participants research is any safer 8 years after Jesse Gelsinger died (PDF).  They generally answer this question in the negative (as would I), and it is worth noting that some of Paul Gelsinger's public comments after Jesse died suggest that both he and Jesse were laboring under the therapeutic misconception.  (To be more precise, Paul's comments indicate that he was misled into believing the intervention would be likely to produce individual benefit for Jesse).

My point is simply this: while it is wonderful that an application of gene transfer research has demonstrated therapeutic efficacy, there are other important lessons lurking in the background of the story that should not go unnoticed.

Finally, speaking of the University of Pennsylvania, Anita Allen has an apt article up on SSRN entitled

The Poetry of Genetics: The Pitfalls of Popularizing Science.

Hypatia: A Journal of Feminist Philosophy (forthcoming).

Abstract:

The role genetic inheritance plays in the way human beings look and behave is a question about the biology of human sexual reproduction, one that scientists connected with the Human Genome Project dashed to answer before the close of the 20th century. This is also a question about politics, and, it turns out poetry, because, as the example of Lucretius shows, poetry is an ancient tool for the popularization of science. "Popularization" is a good word for successful efforts to communicate elite science to non-scientists in non-technical languages and media. According to prominent sociobiologist E.O. Wilson, "sexual dominance is a human universal." He meant, of course that men dominate women. Like sociobiology, gene science is freighted with politics, including gender politics. Scientists have gender perspectives that may color what they "see" in nature. As the late Susan Okin Miller suggested in an unpublished paper tracing the detrimental impact of Aristotle's teleology on western thought, scientists accustomed to thinking that men naturally dominate women, might interpret genetic discoveries accordingly. Biologists have good, scientific reasons to fight the effects of bias. One must be critical of how scientists and popularizers of science, like Genome author Matt Ridley, frame truth and theory. Ridley's "battle of the sexes" metaphor and others have a doubtful place in serious explanations of science.

Recommended!

Conflicts-of-Interest-O-Sphere

The American Association of Medical Colleges has released its Report on Industry Funding of Medical Education (PDF), the result of over 2 years of work.

There is lots of good discussion on this: Howard Brody, Daniel Carlat, Merrill Goozner, and, in detail, Roy Poses from Health Care Renewal.

Also, please be sure to check out the horrifying details related by Clin Psyc on the newest Paxil study.  While it may be too much of a generalization to suggest that professionals in general do a poor job of self-regulation, the modern history of the medical profession (since 1847) should not inspire confidence.  As someone sympathetic to virtue ethics, I believe quite strongly that the building of professional and virtuous character should be a paramount pedagogical goal for medical education.  Yet, given the legacy of lax self-regulation, which, as CP notes, continues to this very day, it is becoming increasingly untenable to suggest that such self-regulation is sufficient to resolve the worst problems of scientific misconduct and conflicts of interest.

Thoughts?