And we're back! Sorry for the total darkness, but 125 pages of writing in 5 days will keep anyone busy.
More substantive blogging is forthcoming, but for now, take a look at the latest issue of Social Science & Medicine, where the theme is stigma, an extremely important topic in the medical humanities and in health care in general.
(h/t SDOH Listserv)
Maybe there is hope after all. A primary theme of MH Blog over the last 6-8 months has been the relative lack of attention paid to the social determinants of health in thinking about health policy. However, when the New England Journal of Medicine runs an Editorial entitled Beyond Health Care -- Socioeconomic Status and Health (free full-text), co-authored by a social epidemiologist, no less, perhaps there is reason for cautious optimism.
Indeed, there are some signs that the policyscape may be shifting trajectories ever so slightly, what with the Commission to Build a Healthier America's focus on SDOH, the recent Health Affairs theme issue, Steven Woolf's recent article in JAMA. Whether this discourse will translate into actual policy change remains, unfortunately, quite cloudy, IMO. And in a society in which we cannot even marshal the support needed to insure basic care for its residents, I admit to skepticism that we can effect the wholescale changes in conception, allocation, and understanding (of health and illness) that would need to happen to bring about change in this arena.
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?
In the May 28 issue of JAMA, Steven Woolf provides a particularly insightful commentary on the case for allocating more resources to primary prevention.
The commentary does not feature an abstract, but Wooff clearly "gets it," and addresses a number of crucial points we've mentioned here on MH Blog, including:
"Resources for health promotion and disease prevention exist in the bloated U.S. health care budget ($2 trillion per year), much of it consumed by overuse and overcharging. Services with no measurable health benefit consume 30% of Medicare dollars."[citation omitted]
Indeed! Point. Click. Read.
Jill Fisher (Women & Gender Studies - Arizona State ) has authored a fascinating, provocative new article in the latest Social Science & Medicine entitled Practicing research ethics: Private-sector physicians & pharmaceutical clinical trials.
Here is the Abstract:
This paper focuses on constructions of research ethics by primary care physicians in the USA as they engage in contract research for the pharmaceutical industry. Drawing first on historical studies of physicians as investigators and then on 12 months of qualitative fieldwork in the Southwestern US, this paper analyzes the shifting, contextualized ethics that shape physicians' relationships with patients/subjects and pharmaceutical companies. Just as physicians followed professional codes of ethics prior to the codification of acceptable research conduct in the 1980s, physicians today continue to develop tacit systems of research ethics. This paper argues that private-sector physicians primarily conceptualize their ethical conduct in relation to the pharmaceutical companies hiring them, not to human subjects they enroll in clinical trials. This is not to say that these physicians do not follow the formal U.S. regulation to protect human subjects, but rather that their financial relationships with the pharmaceutical industry have a greater influence on their identities as researchers and on their constructions of their ethical responsibilities.
I agree with many of the author's arguments and conclusions, though not all of them. For example, while many scholars have noted the errors in the traditional belief that human participants research prior to WWII was not governed by norms, it hardly follows from the fact that such research was norm-governed that the norms that did govern were ethical. To infer otherwise would be a rank instance of the naturalistic fallacy. Thus, the fact that the author's research suggests a continuity in the way that "physicians continue to develop their own codes of ethics in response to their professional roles and responsibilities" does not imply that these constructions are ethically adequate.
Still, the author's conclusion seems sound to me: "Although physicians are not immune to the critiques of the bioethics community and the mainstream media regarding their work, they construct their sense of what is ethical through their everyday practices in the clinic in relation to the needs of the pharmaceutical industry and their own business bottom-lines."
Recommended.
Here at MH Blog, I've discussed on multiple occasions the strong correlations between education and health, suggesting that if we really want to improve population health and reduce human suffering, allocating larger proportions of resources to education is likely one of the best means of improving health. This in turn highlights the idea supported by many SDOH theorists, that social policy is health policy, and vice-versa.
Though there is quite literally a mountain of evidence linking education and population health, it never hurts to have more, as a new study released in PLoS One demonstrates. The study, authored by investigators from ACS and the CDC, set out to examine trends in inequalities related to education using national U.S. data. The authors conclude that
"Socioeconomic inequalities in mortality are increasing rapidly due to continued progress by educated white and black men and white women, and stable or worsening trends among the least educated."
Social policy is health policy. And vice-versa. The evidence is there, and it has been there for at least 30 years (to the famous 1974 Lalonde Report (*PDF)). It's beyond sad to me that (in my view) discussions of specific health policies typically exclude from the discourse analyses of relevant social policies. We can (and should) do as excellent a job as we wish in more justly allocating access to care; but if we continue to fail at translating the evidence that education -- amidst other social and economic determinants -- is a powerful determinant of both population health and disparities into public health policies, I submit that we are unlikely to have the effect on population health that we wish for and that we ought to have.
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!
Alice Ristroph has an excellent post over at CoOp on the relationship between criminal law and neuroscience. She writes:
But I’m skeptical that more knowledge of the brain is going to unsettle retributive arguments and the associated attributions of responsibility. (Here, I think I'm in agreement with Jeff Lipshaw's take on experimental philosophy: many moral claims are just not provable or disprovable.) I suspect that whatever we learn about the brain processes of criminals, some persons will look at those brain processes and say, “this criminal deserves to be held responsible; this criminal deserves to be punished.” Put differently, one might say that “responsibility” is a normative judgment, not a fact about the causal mechanisms of the human brain. Whether a defendant “is” responsible depends on whether we (the punishers) decide to hold him responsible. To take an example raised last night, did new facts about the juvenile brain, or about developmentally disabled persons, dictate the outcomes in Roper v. Simmons and Atkins v. Virginia? I don’t think so. It is still the case that some will look at all the empirical information available about Daryl Atkins—IQ tests, medical records, brain scans, whatever—and say he deserves to die, and others will look at the same information, and say he does not.
[ . . . ]
All in all, I think it’s pretty hard to unseat the belief in deserved punishment by introducing new facts.
This is right on, in my view. Violence, like any other complex social phenomena, is just that -- irreducibly social. To homogenize all violence as analysable under the same category and to reduce it to brain dysfunction is both patently reductionist and quite dubious, in my view. Not to mention which, it is also exceedingly dangerous. In the comments to Ristroph's post, guest-blogger extraordinaire Frank Pasquale points to a truly brilliant article by Amanda Pustilnik, entitled Violence on the Brain: A Critique of Neuroscience in Criminal Law.
Here is the Abstract:
Is there such a thing as a criminally violent brain? Does it make sense to speak of the neurobiology of violence or the psychopathology of crime? Is it possible to answer on a physiological level what makes one person engage in criminal violence and another not, under similar circumstances?
Current research in law and neuroscience is promising to answer these questions with a yes. Legal scholars working in this area claim that we are close to realizing the early criminologists' dream of identifying the biological roots of criminality. In the grip of a neuroeverything craze, legal scholars, practitioners, and lawmakers have already begun incorporating new neurolaw into criminal adjudications, lawmaking, and criminal law scholarship. These breathless hopes for a neuroscientific transformation of the criminal law, although based in the newest research, are part of a very old story. Criminal law and neuroscience have been engaged in an ill-fated and sometimes tragic affair for over two hundred years. Two failures have appeared in current work that mirror precisely the prior failures. First is the claim is that the various phenomena we call criminal violence comprise a single entity, which arises causally from dysfunction within specific locations in the brain (localization). Second is that violent crimes are committed by people who are essentially biologically different from typical people (otherization). This Article first demonstrates the parallels between current neurolaw claims and past movements in law and neuroscience: phrenology, Lombrosian biological criminology, and lobotomy. It then engages in a scientific critique of the shortcomings of current neurolaw claims about the neurological bases of criminal violence. Drawing on research and interviews with leading neuroscientists, this Article shows that causally localizing what we call criminal violence to bits of the brain is highly scientifically contestable and epistemologically untenable. In viewing the criminal law-neuroscience relationship through the lens of history of science, this Article hopes to offer caveats to legal users of neurolaw and a realistic and constructive portrait of how current neuroscience might inform criminal law discourse about regulating violence.
This paper is brilliant, and is sorely needed. Weaving together historical, legal, social, and cultural analyses, Pustilnik provides a contextualized and devastating critique of our continued penchant to reduce complex social phenomena to individual brains. Not content with merely explaining the history, Pustilnik engages the neuroscience on its own terms, illustrating the divergence and dissent within the praxis of neuroscience, and thereby seriously undermining the excessive reliance on localization that rests at the heart of neuroreductionism (which actually can be traced to the early 19th century, and is relevant to my own work on pain. Contrary to what some scholars have suggested, I quite firmly believe that we are still enthralled with a specificity theory of disease as relates to mental phenomena).
Pustilnik's critique also touches on the dangers of using "biology" to other, though there is obviously a great deal more that can be side of the importance of using neuroscience to stigmatize. Indeed, American eugenics and scientific racism did just that, and relied heavily on then prevailing neuroscientific theories of crime and race. We would be well-advised to exercise extreme caution before skipping down such paths again.
In any case, for those interested in the intersection of criminal law and neuroscience, Pustilnik's paper is a must-read.
A new study has been published on conflicts of interest in the Journal of General Internal Medicine. Here is the Abstract:
Clinical trial volunteers are indifferent, not blind, to conflicts
Unless a researcher has stock ownership in a company whose drug is being tested, telling potential research volunteers about an investigator's financial interests is unlikely to affect their willingness to volunteer, according to a new study published online by the Journal of General Internal Medicine. However, study results also show that many research volunteers put less trust in clinical trial leaders with financial conflicts. The study's findings suggest that researchers and policymakers involved in clinical trials should pay close attention to the impact of financial disclosures on potential study subjects. The research was conducted by investigators from the Johns Hopkins Berman Institute of Bioethics, Johns Hopkins School of Medicine, Duke University School of Medicine, and Wake Forest Schools of Medicine and Law. The study was funded by the National Institutes. The study was funded by the NIH.
Some comments: while it is always worthwhile to investigate the views of participants in clinical research, I wonder what the appropriate ethical conclusions ought to be.
First, we know that many of those actually subject to COIs labor under fundamental misunderstandings of the way that COIs actually affect human behavior (i.e., that managing COIs and disclosing them resolves all problems, that individual virtue is proof positive against the behavior-altering effects of COIs, etc.). A fortiori there is no reason to expect that those with no experience of the pathways of those COIs would have widely different understandings.
Second, and perhaps more important, what difference does it really make if trial participants are indifferent to conflicts? It would be a rank instance of the naturalistic fallacy to conclude therefrom that we therefore ought not care much about the existence of those COIs, esp. where we have very good evidence that these COIs in fact do exert significant influences on human behavior. So many participants don't seem to care much -- well, frankly, neither do many investigators. But both are mistaken. Both should care, and we ought not permit the status quo to simply sail along without at least trying to educate both professionals and participants on the nature of the problem.
Thoughts?
Several articles of interest:
Scott Burris (Law - Temple)
Regulation & Governance, Vol. 2, No. 1, pp. 65-84, March 2008
Abstract:
Under U.S. regulations known as the Common Rule, federally-supported human-subject research must be reviewed by an Institutional Review Board (IRB). The Common Rule system looks from a distance like an innovative instantiation of prescriptions for constitutive regulation and soft law, but in practice has grown into a self-referential, unresponsive and legalistic bureaucracy. The paper reviews the criticism of the system and discusses why it fails to regulate in an efficient and effective way, pointing in particular to the poor fit between the IRB and its assigned tasks. Turning to reforms, the paper uses the heuristic of regulatory space to describe the range of actual and potential regulators with the capacity to set standard, monitor compliance and discipline violators in the realm of research. Three essential conceptual changes are set out to frame the technical regulatory reform discussion: facing up to the built-in limitations of the IRB as an oversight body; narrowing the range of risks the system is tasked to control; and disentangling the conflicting regulatory logics of behavioral standard-setting and virtue promotion. It concludes with a roster of possible changes that would make the IRB a more responsive regulator, enroll a wider range of actors in the promotion of ethical virtue, focus resources on more serious risks, and address the structural causes of researcher misconduct.
There was much I liked about this article, though I certainly did not agree with all of it. I personally am quite sympathetic to calls for a more thorough overall of the system by which we assess the ethics of human participants research. Though Burris obviously perceives the importance of such ethics, at times he veers close to rejecting the entire project because of his dissent with the ways in which the system has been analyzed and construcuted through traditionally dominant bioethics paradigms.
As I've noted before, dissatisfaction with traditionally prevailing modes of bioethics -- in which I enthusiastically share -- hardly diminishes the importance of Plato and Aristotle's questions as applied to research: what is the good? How shall we live?
Still, Burris's take and recommendations are original, and there is no doubt such novel thinking is needed in thinking about the regulation and ethics of research.
Thinking Historically About Public Health
Alison Bashford (Univ. Sydney - History); Carolyn Strange (Australian National University)
Abstract:
This paper argues that analysing past public health policies calls for scholarship that integrates insights not just from medical history but from a broad range of historical fields. Recent studies of historic infectious disease management make this evident: they confirm that prior practices inhere in current perceptions and policies, which, like their antecedents, unfold amidst shifting amalgams of politics, culture, law and economics. Thus, explaining public health policy of the past purely in medical or epidemiological terms ignores evidence that it was rarely, if ever, designed solely on medical grounds at the time.
From the text:
Whether or not they make explicit links to the present, historically minded studies of public health confirm that past practices inhere in current perceptions and policies, which, like their antecedents, unfold amidst shifting amalgams of politics, culture, law and economics. in addition to increasingly sophisticated medical expertise.
[ . . . ]
Thus, for example, the immediate response to SARS-infected individuals and suspects SARS "hotspots" in Asian and Canada in 2003 was fundamentally the same as the European response to cholera in 1831; surveillance, isolation, quarantine, border control.
This is a simply brilliant article, one of the best I've ever read in expressly detailing the importance of history for contemporary public health policy. Highly recommended.
