Medical Humanities Blog

On Eugenics & History (I)

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?

On "Science and Scientism in Nineteenth-Century Europe"

Andrea Westermann (ETH Zurich, Institute of History) has a nice review up on H-GERMAN (cross-posted to H-SCI-MED-TECH) of Richard Olson's new book, entitled Science and Scientism in Nineteenth-Century Europe.

Here are some excerpts to whet your appetite:

The book under review deals with the "transfer of ideas, practices, attitudes, and methodologies from the context of the study of the natural world into the study of humans and their social institutions"
(p. 1), a process Richard Olson refers to as "scientism."  It does not deal, as one might expect, with the history of the natural sciences and their popular reception . . . Olson traces a history of those European ideas and social theories which, relying on the authority of natural science, earned some measurable political influence at the time: liberalism, socialism, positivism, communism, and social Darwinism.  As with his earlier works, Olson aims at showing that modern Western political culture, religion, and literature are beholden to the body of knowledge the natural sciences accrued over time.  In short, the book argues that, from the late eighteenth century onward, a basis in science was the driving force in the reasoning about and the political development of social organization.

This is interesting, because the conception of scientism that I have discussed on MH Blog is entirely different from Olson's usage here.  Westermann comments on this:

Olson's need to summarize specific advances in the natural sciences in order to explain what exactly had been transposed into the social realm distracts from a straightforward line of argumentation, and so does his defense of the meaning of "scientism" against the views of rather dated epistemologies (such as that found in Friedrich August von Hayek's pejorative perception of "scientistic" approaches).

Hmmm . . . dated? I am dubious, though I certainly would not choose Hayek as a key expositor of the notion of scientism addressed here.  Nevertheless, the whole review is well-worth reading.

On False Hope

I recently learned of the publication of a book entitled False Hope: Bone Marrow Transplantation for Breast Cancer.  Oxford Press published it in 2007, and it is authored by Richard A. Rettig, Peter D. Jacobson, Cynthia M. Farquar, and Wade M. Aubry.  Here is the blurb:

In the late 1980s, a promising new treatment for breast cancer emerged: high-dose chemotherapy with autologous bone marrow transplantation or HDC/ABMT. By the 1990s, it had burst upon the oncology scene and disseminated rapidly before having been carefully evaluated. By the time published studies showed that the procedure was ineffective, more than 30,000 women had received the treatment, shortening their lives and adding to their suffering. This book tells of the rise and demise of HDC/ABMT for metastatic and early stage breast cancer, and fully explores the story's implications, which go well beyond the immediate procedure, and beyond breast cancer, to how we in the United States evaluate other medical procedures, especially life-saving ones. It details how the factors that drove clinical use--patient demand, physician enthusiasm, media reporting, litigation, economic exploitation, and legislative and administrative mandates--converged to propel the procedure forward despite a lack of proven clinical effectiveness. It also analyzes the limited effect of the technology assessments and randomized clinical trials that evaluated the procedure and the ramifications of this flawed system on healthcare today. Sections of the book consider the initial conditions surrounding the emergence of the new breast cancer treatment, the drivers of clinical use, and the struggle for evidence-based medicine. A concluding section considers the significance of the story for our healthcare system.

I have both mentioned this narrative on MH Blog as well as written on it, and this book, which I have just ordered, promises to be an important contribution.  Particularly important, this narrative invalidates the oft-heard contention that terminally ill patients should be given unfettered access to such experimental protocols because they have nothing to lose.  This is a technically invalid argument.  There are legitimate arguments in favor of granting such patients access to experimental protocols -- the heart of the Abigail Alliance case -- but the notion that the patients "have nothing to lose" is not one of them.  Such patients have a very great deal to lose.  Their lives could be shortened, which would seem a particularly cruel result for a terminally ill patient who presumably values greatly the time left to them.  In addition, such patients could suffer terribly, as many who underwent HDT/ABMT did (it is a ghastly procedure with significant mortality risks).

The point is that in the discourse over whether terminally ill patients should be granted access to experimental protocols -- and who should pay for them -- attention should be given to the history of HDT/ABMT for illness sufferers with advanced breast cancer, to demonstrate the fallacy of maintaining that the illness sufferers have nothing to lose.  Whatever the arguments in favor of such access -- and there are formidable arguments among them -- this is not one of them.  Finally, the story also demonstrates the power and scope of the therapeutic misconception, which is also at the heart of the Abigail Alliance litigation.

Medical Humanities Bookworm: On Being A Doctor 3

Today's Medical Humanities Bookworm features On Being A Doctor 3, Christine Laine and Michael A. LaCombe, eds. (Philadelphia: American College of Physicians Press, 2007).

This book is the third volume of a series exploring the role of literature in medicine.  More specifically, all of the stories, essays, and poems contained in the book first appeared in Annals of Internal Medicine between 1999 and 2006.*

The book is thematically organized into sections "On Society and the World Around Us," "On Becoming a Doctor," "On Being a Patient," "Balancing the Personal and Professional," "Those Who Are Our Patients," "On Aging," "On Death and Dying," and "Hospitals, Health Systems, Contentions."  I particularly enjoyed the section on being a patient, as I am drawn to health care provider's illness narratives for a variety of reasons.  Literature and medicine scholars often write about the importance of the moral imagination, and what interests me about the stories told by providers who become patients is that imagination, it would seem, is superfluous.

Though there are many reasons for bringing literature into medical practice, there are both ethical and aesthetic imperatives for doing so.  From the ethical perspective, reading literature about medicine can provide important space for physicians and providers to reflect upon difficult moral issues (faced by characters), to weigh questions of character and virtue, and, in so doing, to sharpen the lived flow of experiences as a provider.  The phrase "lived flow of experiences" may seem like fluff, but it is actually a term used by some medical anthropologists intended to refer to the daily moments of a person's conscious life, as opposed to the abstractions that typically dominate academic discourse.

Physicians that read and reflect upon other physicians' experiences, as expressed through memoir, essay, short story, or poem, have the opportunity to examine the ethical stuff of daily practice.  The ethical content of the literature collated in On Being A Doctor 3 is both obvious and rich.  Ethics, as Iris Murdoch notes, is a factor in all of our lived lifes, in the moments of our practices.  It is hardly confined to the quandaries or disasters that characterize medical ethics for so many.

Thinking about ethics in the life of medical practice purely in terms of those quandaries is, I submit, a deeply impoverished way of conceiving about the ethical (medical) life.  As others have noted, reading and reflecting about literature and medicine may also enhance one's moral imagination.  This is because quality works of literature tend to require the reader's response to the particular experiences the character faces: 'What should X do? Why? What would I do?' Sharpening one's own moral imagination would seem to be a boon to clinical practice in and of itself. 

Moreover, Rita Charon has pioneered the term "narrative medicine" to refer to the ways in which reading and analyzing narratives may itself enhance therapy and practice:

Through rigorous and disciplined training in such narrative skills as close reading of literary texts and clinical texts, narrative writing about patients, and reflection on one's own clinical experiences, doctors can learn to attend accurately to what their patients tell them (in words, silences, gestures, and physical findings), can reconcile the multiple contradictory versions of any given clinical story, can interpret their own emotional responses to patients, can imagine robustly each patient's plight, can adopt the patient's or family's perspective on the events of illness and–as a result of all these–can offer singularly fitting care.

Though narrative studies are not my area of specialization within the medical humanities (my focus is on ethics and on the history of medicine), I believe such work to be integral to the overall medical humanities' project of rendering medical practice more in-touch with its participants' daily practices, with the lived flow of their experiences.  On Being A Doctor 3 is an excellent source of material for work in narrative and pathographies in general.

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*Full Disclosure: Anne Hudson Jones, the Program Director of my graduate program, is currently an Associate Editor of Annals.  As far as I know, she has no idea that I have been asked to review this book, and I have not received any payment, gift, or token in exchange for this write-up.   

Medical Humanities Bookworm: Survival of the Sickest

Today's Medical Humanities Bookworm reviews Survival of the Sickest by Dr. Sharon Moalem with Jonathan Prince.

Moalem has a Ph.D in human physiology with a focus on neurogenetics and human evolution, and is currently finishing medical school at Mount Sinai College of Medicine in New York City.

Oversimplified, Moalem's thesis is that many diseases, especially chronic ones, may continue to exist in the gene pool because they supplied our ancestors with evolutionary advantages.  This is unremarkable.  It has been known for quite some time, for example, that sickle cell trait confers resistance to malaria, which is one reason why persons of African descent are virtually the exclusive carriers of sickle cell trait.

But Moalem goes much further, and argues that many diseases that had not been understood in the context of reproductive fitness actually did confer an evolutionary advantage, such as hemochromatosis, plague, and juvenile diabetes.  Much of the book is devoted to explanation of how these diseases did confer such advantages. 

Moalem goes further, however, in drawing on the circular geometry of systems biology (the feedback loop model being one of the most common and useful metaphors), and reasons that it is important not to overlook the ways in which human activities have prompted evolutionary changes, as well.  Extreme virulence tends not to confer evolutionary advantages on microbes simply because the human host may die too quickly, before the microorganisms have a chance to secure a new host.  This is one reason why microbes that have some of the longest histories of human infection have evolved to exist in relative stability with the human host.

One example of this is bacteria in the gut, and an even more extreme example of this may be mitochondria, which are descendants of ancient bacteria that evolved to become a crucial part of human cell biology.  Moalem cites some of the ideas of biologist Paul Ewald to argue that we should consider entirely new strategies of understanding disease, and that measures designed to prompt evolutionary changes in dangerous microbes may potentially be more effective than current forms of treatment.  Unfortunately at least in the case of bacteria, our most common and effective means of treatment promotes increased virulence by way of drug-resistance.  Ewald, and Moalem, suggests that perhaps we can harness this relationship in our favor.

All in all, I liked the book, though I did have several reservations.  The first is the "evolutionaziation" of social phenomena, which might be analgous to medicalization.  That is to say, it is axiomatic in the medical humanities that illness is experienced socially, and that seeing such experiences solely via the clinical gaze is reductionist and transforms the provider into a technician who merely treats the disease, as opposed to healing the patient.  There is a similar danger, IMO, in seeing illness solely in the context of evolutionary advantage.  This is not deny the significance of evolution in our understanding of pathology and disease, but simply to suggest that there may be a tendency to grant far too much explanatory power to evolutionary theory.  The extension of such theory into domains in which other modalities may reveal much more of human and ethical significance is the very definition of scientism.

This is not to accuse Moalem and Prince of outright scientism, especially because Moalem's personal story of how he became interested in these problems -- in light of his grandfather's illness -- is heartfelt and touching.  Moalem and Prince understand the significance of the intersubjective and social elements of illness, but I would have preferred much more focus on these issues than on evolutionary paradigms.  But, I am a medical humanist in-training, so I suppose such a response from me would hardly be unexpected.

If I am wary of the tendency to seek to explain so much of health and illness in context of evolutionary theory, I am frequently dismayed by the ways in which genes are portrayed.  Contrary to what many believe, genes themselves explain little of human health and illness, because genes exist only in a nonlinear dynamical system in which countless attractors and influences (including other genes) work in integrated and complex ways to produce overall system behavior.

In short, as Evelyn Fox Keller reminds, gene action is far more interesting than genes themselves, because what we should like to know, IMO, is how genes work to produce actual effects.  And this is an infinitely more complicated question than deciphering genetic information in and of itself, which is partly why the Human Genome Project, as important as it clearly is, has not yet revolutionized human existence.

I did enjoy the book, and Moalem's perspective is certainly intriguing.

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?