While readers of MH Blog may be interested in all of the articles printed in the latest Social Medicine, I want to draw y'alls attention in particular to an interview with Sir Michael Marmot, who needs no introduction here.
As with anything written by or even pertaining to Marmot's work, it is highly recommended.
H-Law published a review by Lynne Curry of two recent books on eugenics, including Paul Lombardo's account of Carrie Buck, and her experiences before, during, and after the notorious case of Buck v. Bell.
Here is an excerpt from the Review:
Eugenicists, many of whom were associated with the Eugenics Record Office in Cold Springs Harbor, New York, exercised a profound and disturbing influence on law and social policy, including drafting a model compulsory sterilization law and then vigorously campaigning to have it replicated in the states. While much of this material will not be new to historians, Carrie Buck’s story becomes even more compelling steeped in the rich detail that Lombardo provides. Buck was an extremely poor, barely educated, seventeen-year-old rape victim, who in 1920s Virginia became a pawn of a blatantly self-serving cast of incredibly shady characters. Mandatory sterilization laws had met with mixed success in state courts, and therefore in Virginia a small circle of eugenicist lawmakers, doctors, and institutional directors conspired to write and enact a statute and then manufacture a test case to gain a judicial stamp of approval for their own project. Lombardo vividly presents the patently absurd case concocted purporting to show that Buck was both “feeble-minded” herself and the daughter and mother of feeble-minded females, rendering her a genetic threat to the population and a fit subject for the operation. (Her younger sister was also sterilized.) Buck’s lawyer, himself a major crusader in Virginia’s sterilization campaign, “violated every norm of legal ethics” in deliberately failing his client at each step in the case, leaving Buck quite literally defenseless (p. 155).
I had the opportunity to meet Dr. Lombardo at the AAHM Meeting in April, and it was wonderful to get the chance to chat with him a bit about the history of eugenics.
Dr. Lombardo has compiled a wonderful web site in support of his book and his work, which features a rich digital supplement chock-a-block with downloadable primary sources from the public domain. I cannot recommend either the book or the website enough.
As notorious as Buck v. Bell is, I think it is actually underemphasized in terms of its importance, mostly because the case aptly demonstrates how powerful was the hold eugenics exercised on American society during the 1920s. Lombardo's book, which I am currently in the middle of, does an excellent job of separating the scholarly and religious debate over eugenics from the widespread acceptance it enjoyed among wide swaths of the lay public. This last point is an important methodological aspect of any social history, which both Fairburn and Jenner warn against (presuming that the attitudes, beliefs, and practices of an elite subsume those of various less privileged communities and subgroups).
Having legal training as to Buck v. Bell helps, not so much because the case is difficult to interpret, but more because knowing anything at all about American legal history suggests just how visionary and singular a mind was Oliver Wendell Holmes. Arguably the most important jurist in that history, and one of the most influential in Anglo-American jurisprudence itself over the last 100 years, Holmes was nevertheless ready, willing, and able to utter the infamous line: Three generations of imbeciles are enough. This is a critical example of the reach and power of eugenics ideas, and it is absurd, as so many do, to see this history as a curio, an artifact.
Roughly 90% of pregnant women informed that their fetus has trisomy 21 (Down Syndrome) choose to terminate the pregnancy. I do not judge this decision, but do want to note that there is no way to interpret this as anything other than an example of the persistence of eugenics tropes. Disability studies scholars have repeatedly pointed out that prenatal testing itself is founded on eugenics, whether we endorse or reject the practice.
The history of eugenics demonstrates the importance of understanding history dialectically, as events, ideas, and conditions continue to shape the world we inhabit in profound ways. There are, in my view, fewer short-sighted approaches to the study of history then to perceive it as a linear "that-was-then-this-is-now" phenomenon. History has much more to offer than that. Despite the frequency with which people bandy about Santayana's quote, my suspicion is that a much lower percentage of those who quote him approvingly actually understand why it is that history repeats itself. It does so, in short, because it never really leaves us.
Thoughts?
The latest issue of the Bulletin of the History of Medicine has been released. You can access the TOC here. As usual, lots of fascinating material, including the 2007 Fielding Garrison lecture, and articles on epilepsy among slaves in the antebellum South, patient autonomy in the history of surgery, and the history of pharmaceutical promotion in the U.S.
Some of my professional work involves health inequities and American Indians, and rarely do I engage in such work without feeling like I must weep long and hard.
There is too much too say, and blogging is such a poor medium for saying any of it, but this article surveys some of the key issues well. Excerpts:
On some reservations, the oft-quoted refrain is "don't get sick after June," when the federal dollars run out. It's a sick joke, and a sad one, because it's sometimes true, especially on the poorest reservations where residents cannot afford health insurance. Officials say they have about half of what they need to operate, and patients know they must be dying or about to lose a limb to get serious care.
[ . . . ]
In Washington, a few lawmakers have tried to bring attention to the broken system as Congress attempts to improve health care for millions of other Americans. But tightening budgets and the relatively small size of the American Indian population have worked against them.
"It is heartbreaking to imagine that our leaders in Washington do not care, so I must believe that they do not know," Joe Garcia, president of the National Congress of American Indians, said in his annual state of Indian nations address in February.
For some of the horrifying statistics regarding American Indian health, see here. A better narrative for the critical importance of the social determinants of health barely exists, IMO (indeed, the superlative documentary Unnatural Causes spends quite some time discussing SDOH and American Indians).
But the travesty continues. 400 years, and we still cannot get our heads out of our collective you-know-whats.
It has been some time since I have read a paper in which I can endorse virtually every word. Of course, it helps when the author is making claims closely related to those which I have developed in several places, and at most length in my dissertation. The author I speak of is Walter Glannon, and the article is just out in the latest Bioethics, which is a theme issue on neuroethics. The title of the article says it all: Our Brains Are Not Us.
Here is the Abstract:
Many neuroscientists have claimed that our minds are just a function of and thus reducible to our brains. I challenge neuroreductionism by arguing that the mind emerges from and is shaped by interaction among the brain, body, and environment. The mind is not located in the brain but is distributed among these three entities. I then explore the implications of the distributed mind for neuroethics.
Glannon makes qualitatively similar claims as Bennett and Hacker, and interestingly, even cites Wittgenstein, but does not expressly discuss the mereological fallacy (though I think a fair reading suggests that is exactly his concern). He does adopt a phenomenological approach, which I do as well in my dissertation, and endorses a nonlinear, systems model of the relationship between brains, minds, bodies, and lifeworld, one which features circular causation.
Excerpting is useless, as the entire article should be read post-haste by anyone even remotely interested in the subject. My highest recommendation.
One of the most effective and thoughtful critics of traditionally dominant traditions of bioethics practice in the West is Leigh Turner. Turner recently remarked in an article that an increasing range of voices and approaches is present in bioethics scholarship. While I spend a fair amount of time on MH Blog spelling out some of my concerns with traditional conventions of such scholarship, it is important to evaluate the broad scope of the work with an eye to Turner's point. To that end, I am especially pleased to note an article published in the current Hastings Center Report, which epitomizes what Cat Myser has taken to calling an anthropologically or social-science informed bioethics. The title of the article is Conversations with Kidney Vendors in Pakistan: An Ethnographic Study.
It is available free full-text. Here is the Abstract:
The growing concern about the shortage of kidneys available for transplantation has led some physicians, economists, and bioethicists to call for monetary inducements and “regulated” organ markets as a way of expanding the number of kidneys obtained from living, unrelated individuals. In contrast, those opposed to the idea of organ sales believe that such practices lead to exploitation of the most vulnerable people in society for the benefit of the privileged. Missing from the literature is in-depth sociological work on the vendors—the men and women who opt to undergo nephrectomy for money—and the on-the-ground realities that frame their decision. Very little is known about the sociological and psychological effects on vendors and on the families and societies they belong to when faced with a situation in which the only way to address financial difficulties is to sell a kidney.
Our aim is to turn the light on those who sell kidneys. Our research provides a “thick” description of the lives of kidney vendors and their families in Pakistan, people who stand at the center of organ commerce and yet have remained largely invisible. We attempt to open a window into their lives, to capture through their narratives what it “means” to them and their families when circumstances compel them to sell a kidney, and the ways in which this act affects connected existences.
This is a wonderful article, full of appropriate and relevant challenges to methodologically individualist and atomistic (see Taylor 1995) approaches to the ethics of kidney transplantation in developing countries. (Indeed, as the authors note, there are very few analyses of any kind addressing kidney transplantation in developing countries; the vast majority assume developed world contexts, which underscores Myser's work on the whiteness of bioethics). The anthropological term I mentioned here -- "local moral worlds" -- seems especially relevant to this article, and to unpacking the lived experiences in which the vendors, families, and larger communities inhabit.
Kudos to the Hastings Center Report for publishing such a fascinating, thick analysis, using tools and concepts critical to a rich notion of ethics -- dare I say, a notion of ethics as part of the medical humanities?
Two of my "must-read" journals have released new Tables of Contents.
Topics covered in the new Journal for the History of Medicine and the Allied Sciences include London barber-surgeons 1570-1640, and vivisection, suffragete force-feeding, and responses to scientific medicine in the UK 1870-1920.
Topics covered in the new Medical Humanities include Wittgensteinian approaches to psychiatric diagnoses, phenomenologic and disability studies interpretations of heart transplantation, and a central text in literature & medicine, Middlemarch.
Highly recommended!
We've known since for at least forty years that supply rather than demand is the primary determinant of healthcare utilization (and here again we are discussing healthcare rather than health, which I bring up here only to emphasize the distinction). Studies surrounding the spate of hospital construction following Hill-Burton demonstrated this perfectly well, as has decades of excellent research from the Dartmouth Atlas.
But, as any medical humanities interlocutor understands, stories can be persuasive in ways that an army of facts and data cannot. Thus, I want to particularly recommend Atul Gawande's current article in the New Yorker entitled The Cost Conundrum. No summary would do it justice, as it is a tour de force, even while it simply highlights phenomena that we have known about for decades. Gawande has been on a particular roll of late, in my view, and this latest article continues his outstanding work. Here I excerpt a paragraph that Brad F. found revealing:
Providing health care is like building a house. The task requires experts, expensive equipment and materials, and a huge amount of coordination. Imagine that, instead of paying a contractor to pull a team together and keep them on track, you paid an electrician for every outlet he recommends, a plumber for every faucet, and a carpenter for every cabinet. Would you be surprised if you got a house with a thousand outlets, faucets, and cabinets, at three times the cost you expected, and the whole thing fell apart a couple of years later? Getting the country’s best electrician on the job (he trained at Harvard, somebody tells you) isn’t going to solve this problem. Nor will changing the person who writes him the check.
Read Gawande.
(h/t Health Beat Blog)
I have noted several times on this blog what I perceive to be a marked lack of development on some of the most complex and difficult ethical questions that attend the social determinants of health. That is, once we accept the premise – which we ought to, based on the abundance and quality of the evidence – that social and economic conditions are primary determinants of health and illness at the population level, what ought we to do from a policy perspective? I have generally been disappointed to find that the answer to this question is frequently assumed, e.g., 'we ought to eliminate inequality.' But a basic tenet of moral thinking is that not all inequalities are unjust. Plato recognized this, as have the majority of the most influential Western thinkers on justice (including Rawls, whose concept of distributive justice expressly delineates between inequalities that are unjust, and those that are not).
So if the moral basis for eliminating inequality is tenuous at best, perhaps the normatively preferable policy option is "to compress inequality." But how should we do so? Which inequalities should we seek to compress? What is the priority for compression? Health inequalities? Income inequalities? Inequalities in housing conditions? Inequalities in tax policy? Of course, remediation of all of these inequalities are not mutually exclusive, but part of the reason for this is that they seem to be, to some extent, functions of each other. The links between health inequalities and income inequalities are well demonstrated, but there is also good evidence linking housing conditions and health inequalities, and housing conditions and income inequalities, and it seems implausible that the housing conditions that correlate with health and income are unaffected by their distribution (a quick search does not reveal studies directly addressing the question, but I would imagine they exist).
Another example of a difficult question to answer is whether radical redistribution of income normatively (that is, ethically) preferable to remediation educational inequalities? Why or why not? What does justice demand? If justice demands we do both, and that neither is ethically preferable to the other, does the pragmatic policy outlook for each color our perspective on relative priority? (I argue yes).
The point of the above discussion is not to offer any answers, but to suggest that the questions are important. Given my view on this importance, there are few philosophers from whom I learn more than Gopal Sreenivasan, who recently took up a position at Duke University. Sreenivasan writes extensively on the issue of what policies are ethically warranted in light of the best evidence regarding the SDOH. His recent article, published in the fine new journal Public Health Ethics,* tackles the relative vs. absolute income debate (namely, whether health is more properly viewed as a function of relative vs. absolute deprivation). Here is the Abstract:
This paper reviews the epidemiological debate between the relative income hypothesis and the absolute income hypothesis. The dispute between these rival hypotheses has to do with whether an adequate account of the relationship between income and life expectancy requires the definition of 'income' to include any comparative element. I discuss the evidence offered for the relative hypothesis (which answers, 'yes'), as well as two important criticisms that have been levelled against this evidence. I also offer some critical reflections on the debate from a philosophical standpoint concerned with the ethics of population health. Both hypotheses agree that a redistribution of income towards the worst off will improve their life expectancy.
Sreenivasan concludes that there is as yet no reliable evidence in favor of the relative income hypothesis, but also admits to puzzlement as to why it matters. Proponents of both camps accept the strong correlation between income and health, proponents of both camps support income redistribution as a means of improving population health, and proponents of both camps may, he notes, consistently support the idea that psychosocial pathways are key mediators of the effects of social and economic conditions on health.
In any case, Sreenivasan's analysis is penetrating, lucid, and rewards close reading. His work is some of the best available in reflecting from an ethical perspective on the policy implications of the SDOH.
*Disclosure: I recently had a paper published in PHE.
Stigma is a crucial concept in the medical humanities, and few have mined the inquiry for as long and as effectively as Arthur Kleinman. He has a co-authored editorial(with Rachel Hall-Clifford) on stigma in the current Journal of Epidemiology & Community Health(one of my favorite journals). Here is the first paragraph:
The concept of stigma has undergone important shifts in definition and characterisation since its initial articulation by Erving Goffman in the 1960s. Here, we contend that the study of stigma has focused too heavily on psychological approaches and has neglected to sufficiently incorporate understandings of stigma and stigmatised individuals as embedded in local moral contexts. What exactly is encompassed by the conceptual umbrella of stigma is far more than a compelling theoretical question, since definitions of stigma directly inform efforts to empirically research and combat stigma.
There are few concepts in medical anthropology I am more attracted to than that of "local moral worlds." Indeed, it figures prominently, though in slightly altered usage, in my dissertation (more details on the latter forthcoming). In addition, having read numerous short pieces by Kleinman in various journals over the last few months, I marvel at his ability to pack such meaning and erudition into such small spaces. Concision is a skill I am still working on, as readers of this blog know full well.
In any case, do read Kleinman and Hall-Clifford.
