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BIOETHICS

The Tricky Business of Defining Mental Disorders

The DSM-5, Its Critics, and Its Values

In the wake of the shooting at Sandy Hook Elementary in Newtown, Connecticut, the nation is taking a moment to pause and reflect on how it handles mental disorders and disability.

Before we can diagnose and treat mental disorders, we must first answer a more fundamental question, “What should count as a mental illness?” This question, which exists at the intersection of cultural values and medical science, is inherently thorny. Deciding where to draw the line between “normal” behavior and “dysfunctional” behavior requires us to define both what constitutes normal and what we consider to be dysfunctional—both include a degree of subjectivity.

The Diagnostic and Statistical Manual of Mental Disorders, or the DSM, touted as the “bible” of psychiatry, is the document that draws these lines. It represents the consensus of the psychiatric community and officially recognizes mental illnesses and their diagnostic criteria.

The first edition, published in 1952 by the American Psychiatric Association, or APA, was a short handbook that included descriptions of disorders and findings related to psychopathologies afflicting returning veterans. But what had started as a handbook is now the size of a telephone book, and is used widely both as a diagnostic guide and as an insurance codebook.

The fifth edition of the Manual, known as the DSM-5, is due to be published in May 2013 after more than a decade of work by the American Psychiatric Association’s revision task force. Not unlike earlier revisions, this process has been riddled with controversy. On the eve of the release of the DSM-5, it seems prudent to reflect upon the ethical dimensions of the book and ask, “Why does the revision of a schedule of illnesses generate such heated criticism?”

At first blush, this seems like an easy question to answer and there has been no shortage of responses. There have been almost daily articles in the popular press and academic journals critiquing various aspects of either the substance of the proposed revisions, the revision process itself, or a combination of both.

Substantive critiques generally take the form of concerns about the impact of category shifts on patients or their caregivers. This has been reflected, for example, in concerns over Asperger’s syndrome being folded into the larger category of Autism Spectrum Disorder. Alternatively, critiques proffer “slippery-slope” claims about the creeping medicalization of normal life, as evidenced by claims that patients experiencing grief over the death of a loved one will be diagnosed with major depressive disorder or a toddler’s outbursts will someday count not as the terrible twos but as Disruptive Mood Dysregulation Disorder. The ultimate fear is that such patients will be inappropriately subjected to risky drug therapy to the benefit of Big Pharma.

Critics also attack the evidence (or lack thereof) upon which particular disorders are being added or removed, such as with personality disorders where, for a time, the list of proposed disorders had dropped from 10 to 5. And they express concern about the deficiencies of the manual’s field trials, which yielded less-than-stellar results about the reliability of particular diagnostic shifts.

Procedural critiques have tended to come largely by way of ad hominem attacks on members of the revision task force for being intellectually and morally compromised due to previous relationships with the pharmaceutical industry. Some critiques highlight the importance of the DSM to the financial health of the American Psychiatric Association, which potentially compromises its independence. Others express consternation about the insularity of the revision process, despite unprecedented transparency and a semi-democratic procedure for gathering feedback.

Allen Frances, a leader in the revisions of DSM-3 and 4, has been the most vociferous critic of the DSM-5. His regular entries in popular and academic venues include variations of each of these kinds of arguments.

How does this reaction compare with other fields of medicine? When diagnostic categories shift in oncology or in cardiology; when disorders are discovered and defined in hematology; or when classifications of gastrointestinal bugs are reclassified we hardly hear a chirp from the public or the press. So why the backlash in psychiatry? After all, aren’t we simply talking about another evidence-based medical classification system evolving in light of new research?

Of course not.

Despite the best efforts of researchers to figure out biological substrates for mental disorders, by their very nature psychiatric diagnoses remain in large part influenced by social, political, and ethical values. Psychiatric diagnoses are assigned to patients on the basis not of blood tests, imaging studies, or other “objective” assays, but on clinically subjective assessments of impairment, which in large part rely on self-appraisals by patients. And there exists, most fundamentally, a notion of what constitutes “the good life,” whereby values such as autonomy and independence define the boundaries of function and impairment. Such “value-ladenness” is certainly not unique to psychiatry, but it is certainly more pronounced there than in other medical specialties.

Add to this the fact that psychiatry—and to a lesser extent the other allied fields of behavioral healthcare—has the unfortunate historical distinction of repeated misuse of its basic tools of trade: labels and diagnoses. The evidence is ample. One need only recall the antebellum disorder called drapetomania (a disorder that seemingly caused slaves to run away), the inclusion of homosexuality as a disorder in the first two editions of the manual, or the way particular personality disorder diagnoses seem to disproportionately adhere to difficult female patients.

These historical examples do, in fact, show how psychiatric diagnoses have been misused. But they also illustrate something else: The very fact that we now recognize misuse is evidence that we have made progress in weeding out the insidious biases that may have been smuggled into particular categories. In retrospect, we can easily see clearly how a fundamental ethical principle of medical practice—that diagnoses be used for the benefit of the individual patient—had been subverted by the malevolent intentions of a racist society, by moral or religious ideologues, or by sexist norms.

Frances and others are correct to call attention to the substantive and, in some cases, procedural imperfections of the DSM-5 revisions. Nonetheless, when studied as an episode in the long arc of psychiatric history, the DSM-5 should serve as a reminder that all ambitious scientific and medical endeavors are ethically fraught and value-laden social enterprises.

This need not be a bad thing if the values served are the right ones.

Dominic Sisti is director of the Scattergood Program for Applied Ethics of Behavioral Healthcare, a research program of the Department of Medical Ethics & Health Policy at the University of Pennsylvania.

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