Debunking the Vaccine-Autism Link?
On February 28, 1998, a small study of 12 children published in the British medical journal Lancet suggested a link between autism and the mumps-measles-rubella vaccine (MMR). The study, led by gastrointestinal surgeon Andrew Wakefield, confirmed many parents' long-standing suspicions that the vaccine had triggered autism in their children. Since then, many parents have refused the vaccinations. In 2008, for the first time in 14 years, measles was declared endemic in England, and the Centers for Disease Control reported that the first six months of 2008 saw the highest number of measles cases in the United States since 1996.
But subsequent studies by other researchers have failed to support Wakefield's contention, and troubling facts about his study have been brought to light by journalist Brian Deer. Two years prior to his study's publication, Wakefield was hired as a consultant by attorneys filing a suit against the MMR—a fact he failed to disclose—and some of the children in his study were litigants against the MMR manufacturers. Wakefield also was involved in a project to develop and market an alternative vaccine. Concerned about the wide-reaching effects of the study, its lack of replication, and the possible financial conflicts of interest, Royal Free Hospital, where Wakefield was the director of research and had conducted his study, asked him to do a larger study, offering to underwrite the cost. Wakefield refused, was asked to resign from his position, and subsequently stripped of his British medical license.
In February 2010, a decade after the study's publication, amid further allegations that the study had been misleading in significant ways, Lancet retracted the article. This past January, the British Medical Journal (BMJ) ran a three-part series by Deer, who claimed that several of the study's children had had conditions suggesting autism before they'd been vaccinated, and that some of the children's postvaccination symptoms may have been purposely exaggerated by Wakefield. Denying all allegations of fraud, Wakefield is demanding that BMJ retract Deer's articles and threatening legal action.
Despite the scandal surrounding Wakefield, many remain skeptical about vaccinations. A Harris/HealthDay poll taken just after the BMJ revelations indicates that nearly half of Americans suspect an MMR-autism link. While that connection remains unconfirmed, links between immune system dysregulation and autism, and between gastrointestinal disorders and autism have been firmly established. Those who support the MMR-autism link argue that vaccines overactivate immune systems, triggering dysregulation, gastrointestinal difficulties, and autism. They note that about 80 percent of our immune system resides in the gastrointestinal track.
For parents who suspect that the vaccine was the cause of their children's autism, Wakefield continues to be a spokesperson for their frustration, powerlessness, and outrage, says Northwestern University psychologist Alexandra Solomon, who wrote about her experience as a parent of an autistic child in the July 2009 Networker. With much of the media now declaring the question of an MMR-autism link settled, says Solomon, the money flow and enthusiasm for studies going counter to that position are likely to be cut off. Still, questions remain. Might vaccines trigger autism only in children who have a genetic susceptibility to the disorder? No one has yet run a controlled study on the autism rates between vaccinated and unvaccinated children.
The best advice about MMR, Solomon says, is to talk with your doctor about delaying and/or splitting up the vaccine into measles, mumps, and rubella, especially if there's a family history of autoimmune problems, and to seek the counsel of a physician who's followed the actual research, instead of just the media reports.
DSM-5 and its Critics
Despite delays, the American Psychiatric Association (APA) is now firmly committed to bringing out psychology's revised bible, DSM-5, by 2013. Nonetheless, an unprecedented outcry from past DSM lead editors and members of DSM-5 work groups has been highly critical of the compilation process, of several proposed new diagnoses, and of a major new diagnostic procedure. They say that the work groups are too quickly making decisions that aren't supported by the research. Not mincing words, Allen Frances, lead editor of DSM-IV, fears the 2013 deadline is becoming "a rush to produce an inferior product."
The increasing impact of the DSM can't be underestimated. Originally intended primarily to create a more coherent taxonomy of mental disorders, it now helps shape insurance coverage, lawsuits, criminal prosecutions, and even how we think of ourselves and others. When homosexuality moved from a disorder to a normal expression of sexuality, for example, the attitudes of many gay and straight people shifted, which then influenced social legislation and cultural norms. Its inclusion of PTSD led to a wide range of groundbreaking research and opened the door to millions of dollars in lawsuits and disability payments. From an economic standpoint, its diagnostic categories have led to the increasing use of psychotropic medications, making it a treasure trove for the pharmaceutical industry.
Like earlier editions, DSM-5 will be a blend of hard science, political compromises, educated guesses, and research biases. Frances knows firsthand what this combination can create. Although the editors attempt to classify every disorder, there are always people who don't fit neatly into any existing category, sometimes resulting in the designation of new disorders, despite insufficient research. In spearheading DSM-IV, Frances wrestled with creating bipolar II disorder to describe people who seemed to fit somewhere between depression and the old bipolar diagnosis. "We included it as bipolar II disorder," he says, "because of what seemed to be compelling enough research evidence that it sorted better with bipolar than with unipolar mood disorders." Although he feared that some unipolar patients might be mislabeled and prescribed more powerful mood stabilizers and antipsychotics instead of antidepressants, he decided that the greater risk would be to treat bipolar people with antidepressants. Subsequently, the pharmaceutical industry poured money into advertising and investigating the new diagnostic category. This resulted in a dramatic increase in bipolar II diagnoses and in the use of mood stabilizers and antipsychotics.
Worse yet, according to Frances, bipolar II led to the new diagnosis of childhood bipolar disorder, which caused thousands of children to be mislabeled and heavily medicated. He estimates that if some proposed new disorders, such as attenuated psychotic symptoms syndrome, which attempts to identify adolescents in a pre-psychotic state, make it into DSM-5, 20 to 30 million more people may be diagnosed with mental disorders and medicated.
Frances and Columbia University psychiatrist Michael First also worry about the proposed new shift toward using dimensional scales. Such scales are intended to improve upon the symptoms checklists that encourage a yes or no diagnosis, which many have considered a major flaw of the DSM. But, insists First, there's no good evidence to indicate that these scales will be of any use to clinicians. It'll take years to accumulate outcome data, and he worries that, in the meantime, administrators, insurance carriers, and other restrictors of care might use them to deny coverage to some people, such as those with subclinical or mild mood disorders.
Frances, First, and other insiders are quite familiar with the unintended consequences of rushed deadlines that force decision-making ahead of good science and, however well-intentioned, subvert the fundamental medical principle of doing no harm. "We used to say proudly that DSM was never on the leading edge, but always on the following edge," says First. As DSM-5 rushes toward its 2013 deadline, critics are trying to ensure that, if they can't slow it down, they can at least help make the final decision-making more conservative.
Wikipedia and Psychology Students
When you Google most psychology topics, you'll likely find a Wikipedia article among the first 10 hits. For millions of people worldwide—consumers, therapists, journalists, students—Wikipedia has become a primary source of information about psychology. Its articles range from how psychotherapy works to specific therapy techniques and information on the causes and treatments of depression, bipolar disorder, grieving, and addictions—you name it.
Unfortunately, many of the more than 6,000 articles related to psychology are seriously underresearched and superficial. An article on dialectical behavior therapy, for example, says that it's the first empirically supported therapy for treating borderline personality disorder (BPD), but fails to mention that several other therapies are also effective—something a person with BPD ought to know. Many articles explaining psychotherapy are so lightweight that Wikipedia calls for more research and citations right in the article.
This situation is disturbing to Mahzarin Banaji, president of the Association for Psychological Science (APS), who believes that psychologists have a responsibility to ensure that such widely accessible information about the field is accurate and comprehensive. Now the Wikipedia Initiative, an ambitious APS project, is working to significantly upgrade Wikipedia's psychology articles. In doing so, APS hopes not only to improve the quality of education for psychology students, but to increase the accuracy of the information about psychological science that's freely available to audiences worldwide.
Wikipedia, a collaborative effort, permits anyone to submit or edit an article. Whereas print encyclopedias relied on a narrow task force of experts and were updated infrequently, Wikipedia's strength lies in its 24/7 availability and continuous revisions. The volunteer project WikiPsychology, one of the groups working on the psychology articles, provides a general safeguard against inaccuracy or bias, periodically culling Wikipedia for new psychology articles that have been created, focusing on the most frequently accessed articles, assessing them for reliability and the quality of citations, and then calling upon the Wikipedia community for revisions or additions. Maintaining Wikipedia's spirit of collaboration, WikiPsychology holds online dialogues about specific articles and proposed edits, and requesting new articles on important topics. The group has rated only about 40 of the more than 6,000 psychology entries as a B or higher, so there's a lot of work to be done.
By encouraging students and professors to participate in WikiPsychology and to edit and submit Wikipedia articles, APS hopes to move psychology education from its cloistered, top-down structure into a broader, collaborative venture. Historically, psychology students don't impact the field much until they're well into their careers. Now, they could be making a major contribution to people's understanding of the field right away, as APS President Mahzarin Banaji explains to students and professors in the January APS Observer. "You can take . . . somebody's passable entry and bring it to perfection with the right sentence or two. You could supply new, more compelling, examples. You could diversify the content by showing that a particular view isn't the only one that exists."
Another aim of the Wiki Initiative is to foster a collaborative attitude toward research among students, something often lacking in the competitive, ego-driven worlds of academia and clinical research. Because all Wikipedia contributions are anonymous, the psychology project "runs on the goodwill of those who work for the public good and out of a sense of professional responsibility," says Banaji. "These motivations challenge simple notions of compensation, and even public recognition." Nevertheless, APS will highlight students who make noteworthy contributions, and it urges professors to integrate the Wiki Initiative into their course requirements.
With the help of Robert Kraut of Carnegie Mellon University, an APS task force member and expert in electronic learning and collaborative online communities, APS has developed a website and software to facilitate contributions. They're intended to help students and faculty members locate underresearched articles that fit their specific interests, learn Wikipedia publishing and editing protocols, and connect with others around specific topics. The Wiki Initiative, he says, will engage students in authentic education by helping them learn to do research that's relevant and giving them the opportunity to create work that thousands of people will read.
The Ethics of Confidentiality
There's an ironclad rule, going back to therapy's earliest days, that clinicians should never talk about clients, unless it's for consultation or teaching purposes—and then only with a client's informed consent. But today, when therapists and clients are often on a first-name basis, and fewer people feel there's a stigma to being in therapy, the rule may have become anachronistic. What's the harm in talking about a client with your family, friends, or colleagues at social occasions, especially if you omit names and identifying details? After all, therapists are gregarious, too.
Unsure of the ethical merits of openly challenging traditional rules about confidentiality, few therapists want to be quoted on the issue, but many have strong feelings about it. "Therapy can be so isolating," says one senior therapist, who declined to be identified, "and talking about a client with my wife or a friend cuts through the loneliness." Another therapist, who works primarily with traumatized clients, says that talking about an occasional client with her friends helps ward off burnout. "It's like a buoy for me when I feel like I'm drowning," she says. Sometimes the actions go beyond mere words. One distressed therapist rushed to a lunch date. "I just got a call from the world's most depressing client," she said. "He sounds just like Eeyore," and she launched into a sorrowful braying imitation of her client's recitation of his latest personal crisis.
Such behavior is definitely risky business. "When you talk about a client, you never know when 'six degrees of separation' will come back to haunt you," says therapist and attorney Steven Frankel. Someone may overhear you or be involved with someone you casually refer to.
To avoid the temptation of what appears to be innocent fun, it helps to remember the purpose of the confidentiality rule, says Chicago family therapist Mary Jo Barrett, whose ideas about ethical guidelines were shaped by a survey she conducted with hundreds of clients about what they most valued in therapy. The most frequent answers were safety and security. "They didn't use words like ethics or boundaries," she says, but notes that it was clear that they were putting the ethical rules about confidentiality into their own language.
According to Barrett, the potential harm in these days of more informal, less stigmatized therapy, isn't to clients' reputations, but to their sense of safety and security. If there's any chance that your actions will undermine that fundamental trust—the basic foundation of the therapeutic relationship—she adds, it isn't worth the risk.
For a comprehensive listing of research of autism: www.talkaboutcuringautism.org/medical/autism-studies-jan-2009.pdf
Deer's Wakefield articles: British Medical Journal 342 (January 5, 11, and 18, 2011)
APS Observer 24, no. 2 (February 2011).
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