Confidentiality of DSM-V Update Draws Gripes

[David Baxter PhD]

Confidentiality of Psychiatric Manual?s Update Draws Gripes
by Sarah Rubenstein, Wall Street Journal
December 29, 2008

The American Psychiatric Association is getting criticism for the secret process of putting together the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, a defining volume of mental disorders.

Published by the APA, the manual, known as DSM, is important for insurance payments as well as prescribing and research, and the process of putting it together leads to heated debate. So for the first time, the association has required its contributors to sign a nondisclosure agreement, the New York Times reported earlier this month.

Hot button topics under debate for the latest edition include gender identity and addictions such as shopping and eating, NYT said. And as we?ve noted, sex addiction was in the manual in 1980, dropped in 1994 and brought back up for consideration for the new edition.

The Los Angeles Times this morning quotes Robert Spitzer, the editor of the manual?s third edition, who has broken ranks and published a letter protesting the confidentiality. ?If you don?t know what goes on at someone?s meetings, they?re suspect of having conflicts of interest,? Spitzer told LAT. And conflicts have become a significant issue for the psychiatric association, as Sen. Charles Grassley has been looking into payments to the association from drug companies.

You can read his Spitzer?s letter here. ?This unprecedented attempt to revise DSM in secrecy indicates a failure to understand that revising a diagnostic manual?as a scientific process?benefits from the very exchange of information that is prohibited by the confidentiality agreement,? he wrote.

The psychiatric association told LAT that psychiatrists working on the manual?s update are limited to $10,000 a year from drug makers and that transparency is a priority for those overseeing the process. ?The field of psychiatry has gone from an ideology to a scientific pursuit,? Darrel Regier, who heads the association?s research arm, told LAT.

 

[David Baxter PhD]

Is A New DSM Written in Secret Necessarily Unethical?

Is A New DSM Written in Secret Necessarily Unethical?
by Summer Johnson, PhD
Dec 30, 2008

Sarah Rubenstein from the Wall Street Journal Health Blog has explained that there is a concerning development regarding the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders: it's being written in secret.

The authors of the entries for this latest version of the Bible of mental health has been asked to sign a non-disclosure agreement. The burning question is: why? The second question, of course: is it ethical?

There are many reasons for why a NDA could have been asked of the DSM authors--the APA surely knows that leakage of what authors wrote in the new DSM is bound to cause controversy and the slow trickle of that controversy over time, as each author reports what he or she wrote would cause real political problems for the APA and put a cloud over the DSM-V.

Moreover, unpopular opinions voiced by authors, disclosed before the manual was published, could result in pressure being put on the APA to retract or revise that entry before the 5th version is even printed. History has certainly seen its ups and downs with a variety of entries related to controversial topics classified as "mental defects". Perhaps the APA is hoping to avoid such controversy by releasing the manual all at once--avoiding many of these problems.

The ethical question is much tougher to answer. Asking clinicians and academics to remain silent is, of course, their choice. It is not a breach of academic freedom if they freely choose to sign the NDA. Nor does it suggest that they have something to hide--simply that they will not discuss their opinions until the entire manual is released. In a way, it's not that different from a medical journal article being embargoed until the journal is released and a press release is sent out to the press.

Given the fact that this version of the DSM will be taking on such controversial topics such as "gender identity and addictions such as shopping and eating", it is no wonder that the APA would prefer to keep the lid on until the entire manual is released and let its critics attack the manual in its entirety rather than piecemeal. A political tactic, for sure, but I'm not so sure it's an unethical one.

 

[David Baxter PhD]

Psychiatrists Bash Back at Critics of DSM Revision

Psychiatrists Bash Back at Critics of Diagnostic Manual Revision
Posted by Shirley S. Wang, Wall Street Journal
January 8, 2009

The American Psychiatric Association is striking back at critics over complaints about secrecy in the work on a new version of the Diagnostic and Statistical Manual of Mental Disorders.

Known as the DSM, the tome is the definitive resource for the diagnosis of psychiatric problems and a sociological touchstone. The inclusion of homosexuality as a psychiatric disorder in earlier versions of the manual, for instance, led to contentious debate before the diagnosis was eventually dropped.

This time around the controversy centers on how decisions are being made. For the first time the doctors on the task force revising the manual had to sign non-disclosure agreements, spurring some suspicion, the New York Times reported last month.

The APA defended its process in a statement yesterday, addressing some of the ?daily questions? the group receives about work on the next version of the DSM, which will be the fifth.

David Kupfer, the head of the DSM-V task force, told the Health Blog that he?s been surprised at the amount of attention the DSM revision process has received so far. The perception seems to be that ?there is some smoke-filled room where all kinds of decisions will be made and then ?ah-ha?, here it is,? says Kupfer, a professor of psychiatry at the University of Pittsburgh.

He and others at the APA want to set the record straight about the process because ?some of us have gotten, if you will, sick enough about playing defensive ball and being taken out of context,? said Kupfer.

One of the main criticisms has been the confidentiality clause that all work group members were asked to sign, which has been perceived as a means of keeping the revision process secret. Kupfer says the clause was intended to protect the intellectual property of the DSM. Because the revision process takes years, the intention was to prevent someone involved in the process from, say, writing a book about his or her experience about the revision process prior to the DSM-V?s publication, which is expected in 2012.

But, the clause doesn?t prevent work group members from publishing or talking about information from work group meetings in other ways. Updates about the progress of the revision and research about the manual have been and will continued to be published routinely and discussed at conferences, Kupfer told the Health Blog. Comments from the broader research and clinical communities are welcome and encouraged, he says.

Interested parties can also check out the APA?s website, which contains updates about the progress of the revision process.

 

[David Baxter PhD]

Diagnostic Controversy: the DSM-V in Progress...

Diagnostic Controversy: the DSM-V in Progress...
by Dinah, ShrinkRap
Wednesday, January 14, 2009

I want to begin by saying I don't have any insider info into the process and I don't have an opinion about what's going on. Which is good, because no one asks me.

The DSM is a book that lists the guidelines for making psychiatric diagnoses. It's like a Chinese Menu--- a few symptoms from column A, a few symptoms from Column B, and voila, you've got Diagnosis X. There have been 4 versions to date, and the 5th is in the works.

It would be nice if we could run a definitive test and say, Yup, the Depression Factor is present in your blood, you've got Major Depression, single episode, and the level is 75 so it's "moderate." Or look, the left side of the amygdala is enlarged, therefore it's Panic Disorder. Or, the frontal region has increased metabolism when you burp, so you've got Paranoid Schizophrenia.

It doesn't work that way, we don't have any definitive tests and when we do tests in psychiatry as part of a diagnostic evaluation. It's to make sure the patient doesn't have a brain tumor or a stroke or thyroid dysregulation or hypoglycemia or some other medical condition (that we can see or measure) that explains the symptoms. If the brain looks anatomically normal, if the blood is normal, if there are no funny substances that explain why someone is acting or feeling either badly or weirdly, then by default, it's a psychiatric problem. Some day this may change, but right now that's it. Researchers are making progress towards finding links between psychiatric illnesses (after they are diagnosed as such) and specific genetics or brain metabolic differences, but they don't make a diagnosis and it's all pretty new.

So how are diagnostic criteria decided? A bunch of people sit in a room and decide. They talk, they look at research findings, they pool their experience, and actually I'm not all that sure (keep reading, there are some answers below). The issue of diagnostic criteria and validity is laden with emotion-- there are people who like psychiatric labels, like the drug companies. And there are people who don't like labels -- like those who don't want their sexual preferences or gender distress labeled an illness, Health insurance companies pick and choose what diagnoses they will reimburse for. So once upon a time, homosexuality was a psychiatric illness and it's not anymore.

The DSM-V work groups are in place and these peeps are talking about the next volume and what should change. There have been issues with the process of what they are doing-- the members of these groups signed a non-disclosure document, and my email (why me?) gets messages from people complaining that the process is too secretive, and other messages stating that there is a need for some confidentiality during the process, but it's open and transparent. Today's email came from the American Psychiatric Association, pointing me to a Wall Street Journal blog post about the issue. Roy [of ShrinkRap]also posted on this issue back in November.

Oh, and here's what the APA has to say about the how the process transpires:

The work groups began meeting in late 2007. While the 13 work groups reflect the diagnostic categories of psychiatric disorders in the previous edition DSM-IV, it is expected that those categories will evolve to better reflect new scientific understanding. With the understanding that some continuity from DSM-IV to DSM-V is desirable to maintain order in the practice of psychiatry and continuity in research studies, there has been no pre-set limitation on the nature and degree of change that work groups can recommend for DSM-V.

Each work group meets regularly, in person and on conference calls. They begin by reviewing DSM-IV?s strengths and problems, from which research questions and hypotheses are first developed and then investigated through literature reviews and analyses of existing data. They will also develop research plans, which can be further tested in DSM-V field trials involving direct data collection. In order to invite comments from the wider research, clinical, and consumer communities, the APA launched a DSM-V Prelude Web site in 2004, where these groups could submit questions, comments, and research findings to be distributed to the relevant work groups.

Based on this comprehensive review of scientific advancements, targeted research analyses, and clinical expertise, the work groups will develop draft DSM-V diagnostic criteria. A period of comment will follow, and the work groups will review submitted questions, comments, and concerns. The diagnostic criteria will be revised and the final draft of DSM-V will be submitted to the APA?s Council on Research, Assembly, and Board of Trustees for their review and approval. A release of the final, approved DSM-V is expected in May 2012.​

Read the whole APA web page about this.