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The Politics of Disease Definition: A Summer of DSM-V Controversy in Review

On June 23rd, 2009, an article in press at Psychiatric Times was posted by Doug Bremner, MD on his health blog, igniting debate through the medical community.  That article was an editorial authored by Allan Frances, MD, chair of the committee that collaboratively authored the DSM-IV, in which he passionately criticizes the team presently working on the DSM-V. Frances expresses disappointment in the “confidentiality agreement” which has lent secrecy to the DSM-V authorship process, warns of the possibility of overdiagnosis and unintended consequences in revising disease definitions, and is especially worried about published interviews where David Kupfer, MD, chairman of the DSM-V Task Force has claimed: “There are no constraints on the degree of change”. This boldness is a cause for concern, according to Frances because:

“The simple truth is that descriptive psychiatric diagnosis does not need and cannot support a paradigm shift. There can be no dramatic improvements in psychiatric diagnosis until we make a fundamental leap in our understanding of what causes mental disorders. The incredible recent advances in neuroscience, molecular biology, and brain imaging that have taught us so much about normal brain functioning are still not relevant to the clinical practicalities of everyday  psychiatric diagnosis. The clearest evidence supporting this disappointing fact is that not even one biological test is ready for inclusion in the criteria sets for DSM‐5.”

Shortly after the Frances editorial began lighting up medical blogs, the American Psychiatric Association released a scathing riposte, signed off by prominent APA members, including Dr. Kupfer and APA President Alan Schatzberg, MD. The response only partially addresses Frances’ arguments, suggesting that the confidentiality agreements Frances criticizes are really legal documents meant to protect intellectual property, that many clinicians feel the DSM-IV does not adequately meet the needs of the patients they encounter in practice, that many of the changes proposed for DSM-V are in fact supported by current research, and that, in fact, that the DSM-V process is the most open and inclusive “ever.” Perhaps most surprisingly, the article, penned by the heads of a prestigious medical association and task force, begins and ends dramatically by injuriously emphasizing Frances’ own conflict of interest:

“The commentary “A Warning Sign on the Road to DSM-5: Beware of its Unintended Consequences” by Allen Frances, M.D., submitted to Psychiatric Times contains factual errors and assumptions about the development of DSM-V that cannot go unchallenged. Frances now joins a group of individuals, many involved in development of previous editions of DSM, who repeat the same accusations about DSM-V with disregard for the facts.

Both Dr. Frances and Dr. Spitzer have more than a personal “pride of authorship” interest in preserving the DSM-IV and its related case book and study products. Both continue to receive royalties on DSM-IV associated products. The fact that Dr. Frances was informed at the APA Annual Meeting last month that subsequent editions of his DSM-IV associated products would cease when the new edition is finalized, should be considered when evaluating his critique and its timing.”

Another response, penned by William Carpenter, Professor of Psychiatry at the University of Maryland, and chairman of the DSM-V work group on psychosis, was published in the Psychiatric Times only a few days later, on July 7th, 2009. In this article, Dr. Carpenter is much more dispassionate than the APA piece, and systematically addresses some of the concrete arguments and concerns Dr. Frances put forward in his article, giving a bit more detail about the “confidentiality agreements” (they are in place to prevent task force members from publishing their own diagnostic manuals), and generally arguing that reality is less sensational than Dr. Frances had suggested. Daniel Carlat, MD, helpfully summarizes this article as follows:

“In actuality, there will be very few substantive changes in the DSM-V. Most of the diagnostic criteria will be the same. We might add a handful of rating scales. There will be no ‘paradigm shift.’ We are considering adding a sub-threshold psychosis diagnosis but then again we may not–it’s a complex scientific issue and we, like you, are concerned about overdiagnosis and stigma.”

Carpenter put forth an ostensibly reasonable voice in what was rapidly becoming a vicious battle, but the summer of drama was still unfolding.  Concomitantly with the Carpenter response, Dr. Jane Costello, Professor at the Duke Institute for Brain Sciences where she also co-directs the Center for Developmental Epidemiology and an international expert on the course of mental illness, publicly circulated her letter of resignation from the DSM-V Work Group on Disorders in Childhood and Adolescence. Sharing Dr. Carpenter’s more academic style, she nevertheless contradicts him in expressing a general discomfort with the underlying principle of rewriting psychiatric taxonomy all at once, claiming “I am not aware of any other branch of medicine that does anything like this.”  She further suggests that the taxonomic changes being made by the team are in fact overly dramatic given available data:

“When we began this process, we agreed that changes would only be made if there were empirical evidence to support them. Sometimes (as with Charlie’s work on preschool PTSD) this has been the case. But as time has gone by, the gap between what we need to know in order to make revisions and what we do know has grown wider and wider, while the time to fill these gaps is shrinking rapidly. More and more, changes seem to be made for reasons that have little basis in new scientific findings or organized clinical or epidemiological studies.”

This observation parallels the speculative worry Frances expressed in his editorial that time pressures on the DSM-V task force may soon lead to an unconsidered rush of last minute decisions without empirical support.

The work that the DSM-V task force is doing is of a significance barely comprehensible at present, as it will determine both disease categories for millions of individuals, and delineate drug markets for the world’s largest pharmaceutical companies.

Given this fact, how important is it for social scientists, lawyers, historians and philosophers to monitor the internal politics of this process? Genetics researchers have the assistance and resource of ELSI scholars, but is there an equivalent, well-organized network of researchers devoted to critically analyzing the social, ethical and legal ramifications of the work on the DSM?

Is the DSM-V process really the most open and inclusive process of its kind to date?  It may be the case that some of Frances’ arguments misapprehend the actual situation, but would he be making these kinds of worried, speculative arguments if it were truly an open process? Is it possible that controversy of this sort could lead to more transparency from the DSM-V task force?

Does the proliferation of medical blogs penned by high-profile academic researchers help or hinder the process of disease definition? What will be the public health impact of the universal accessibility of this information?

CJ Murdoch

4 Responses to “The Politics of Disease Definition: A Summer of DSM-V Controversy in Review”

  1. hgreely says:

    The DSM is incredibly important and incredibly poorly understood, certainly outside psychiatry and maybe inside. It ends up playing a big role in law, particularly in issues of social security disability, as well as in the application of the Americans with Disabilities Act. Whether this is a sensible way to classify and define mental illness is a really fascinating question that should receive more attention – though, in my own experience with committees, I’m not sure that “transparency” is always a good thing.

    CJ points out some good questions. Anyone out there with good answers?

  2. [...] extensively over at Mind Hacks (here, here, here and here) and most recently in an update on the Stanford Center for Law and the Biosciences Blog.  The fear that an ever increasing number of individuals might fall under future DSM criteria led [...]

  3. Jeremy H says:

    Interesting
    The idea of a diagnostic system is broadly to seek to understand a range of phenomena by classifying them. Classification systems might be personal, professional, religious, scientific, legal etcetera. The question arises as to what kind of classification system a psychiatric one is. I suspect it falls between stools. It might aspire to being scientific but it isnt there yet and I suspect will never get there. This is because the perceived neeed for its existence is not a scientific but a professional need. The profession needs classification but would probably manage without it if it wasn’t for the insidious roles of industry (mainly pharmaceutical) and law in requiring diagnoses (turning opinions or hunches into “facts”). It would be a responsible movement on the part of mental health professionals and others to view the DSMs more dispassionately, avoiding privileging them as evidence and generally taking a rational and balanced view on mental health issues rather than assuming that The DSMs are an unbiased source of truth. I would not advocate ignoring them. They are thoughtfully written for the most part – but dont make out that they are more than they can possibly be that would be too much of a burden to place on their non narcissistic authors and a burden that the rest of society will have to shoulder.

  4. [...] a year of fomenting controversy, the American Psychiatric Association has taken the unprecedented step of making the draft of the [...]

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