Sharon Begley, the Science Editor for Newsweek, wrote about translational research in the latest issue, and the tone of the essay reminded me of Begley’s previous piece on comparative-effectiveness research. Being an MD/PhD student (just defended!) I am very interested in the process of communicating “from bench to bedside.” New to science as I may be, I found Begley’s arguments to be overly simplistic and short-sighted. (more…)
Archive for Science and the Media
POLITICS. We have a tacit understanding to exclude politics from the blog, but current events are pushing the borders. It’s not our fault, other forces are on the move. At the border last year was the Iraqi civilian body count issue precipitated by articles in The Lancet. That’s when politics intrudes into medical research and literature.
Other borders are matters of licensure, and of permitted and rejected methods and materials, encoded into licensure, food and drug laws, and a myriad of administrative edicts and court decisions. One can’t escape the politics of those, especially when Congress and states start to control as commercial entities, areas that historically belong in culture: professional behavior codes, codes of traditional relationships between physicians and patients, for instance. These are under further pressures of conformity and legal sanctions enforced by the power of central government.
Steve Salerno (web site: www.journalismpro.com, blog: www.shamblog.com), author of the WSJ article on “CAM” and the NCCAM last December that precipitated the Chopra, and Co. responses, brought to attention a recent House hearing at which Congr. Riley (D, Ohio) queried Sec. Sibelius whether she was aware of “mindful meditation” as a cost-saving method that should be included in any federal health plan.
Here we go again. Ten to 15 years ago it was Sen. Harkin legislating research and practice from halls of Congress resulting in the Office of Alternative Medicine and NCCAM. That legislation resulted in financed medical school courses, multiple more lectures and demonstrations, and now med school divisions with endowed chairs, scores to hundreds of employed associates, and with little to no scientific feedback or oversight.
It might seem a bit undemocratic, but science, like medicine or dentistry, is a profession. One doesn’t become a scientist by fiat but by education and training. I am not a scientist. I apply science. My colleague Dr. Gorski is a scientist (as well as physician). He understands in a way that I never will the practical process of science—funding, experimental design, statistics. While I can read and understand scientific studies in my field, I cannot design and run them (but I probably could in a limited way with some additional training). Even reading and understanding journal articles is difficult, and actually takes training (which can be terribly boring, but I sometimes teach it anyway).
So when I read a newspaper article about science or medicine, I usually end up disappointed—sometimes with the science, and sometimes with the reporting. A recent newspaper article made me weep for both. Local newspapers serve an important role in covering news in smaller communities, and are often jumping off points for young, talented journalists. Or sometimes, not so much.
The article was in the Darien (CT) Times. The headline reads, in part, “surveys refute national Lyme disease findings.” Epidemiologic studies, such as surveys, are very tricky. They require a firm grounding in statistics, among other things. You must know what kind of question to ask, how many people to ask, how to choose these people, etc, etc, etc. So what institution conducted this groundbreaking survey on Lyme disease?
I’d just like to take a moment to engage in a little bit of shameless self-promotion and point out that an SBM post has actually seen print. Specifically, my post about the malign influence Oprah Winfrey’s promotion of dubious medical practices on her show (The Oprah-fication of Medicine) has been adapted (with heavy cutting and editing) into an op-ed piece in The Toronto Star, entitled Is Oprah Winfrey Giving Us Bad Medicine?
No one was more shocked than I was when the editor of Sunday Insight section of The Toronto Star contacted me earlier this week to ask if he could adapt my post to a newspaper editorial. Actually, he and his editors did the vast majority of the work in whittling my usual logorrheic prose down to a manageable size and paraphrasing the sections of the NEWSWEEK article on Oprah that I had quoted liberally from. (After all, I didn’t want to be accused of plagiarism.) It was a rather educational experience, actually. Unfortunately, reading the finished version again, I don’t think it quite makes the link between Oprah and the infiltration of pseudoscientific CAM practices into modern medicine as clear as the original post, perhaps because the context of all the other blog posts on the topic by SBM bloggers is missing, which is why I hope that some Star readers will find their way here and be able to read the full length version.
In any case, compare:
The Oprah-fication of medicine (the original, full-length blog post)
Is Oprah Winfrey Giving Us Bad Medicine? (the heavily edited op-ed piece)
And see what you think.
Much to my surprise and delight, my recent blog post about Jenny McCarthy’s “educational” video was picked up by several other blogs and websites, resulting in a small flood of emails applauding my efforts to expose dangerous pseudoscience. I had braced myself for what I assumed would be an onslaught of hate mail (what else would irrational folks do about a sensible warning message?) and found that instead I received a small number of high-fives from advocates and health organizations committed to cutting through the rhetoric and providing accurate information about vaccines. Perhaps the hate is still in the mail?
I began wondering who is in the majority on the issue of vaccines – those who want to study concerns carefully and accept what the science shows, or those who are fixated on blaming vaccines for diseases they don’t cause, despite all evidence to the contrary.
Since the latter are louder than the former, one does tend to feel as if the world has gone a bit nutty. And when celebrities like Oprah Winfrey promote the unfounded anti-vaccine rhetoric of Jenny McCarthy, sensible parents across the country begin to shudder. But when will this shuddering lead to action?
Unfortunately, a frequent topic on SBM has been the anti-vaccine movement, personified these days by celebrity spokesmodel for Generation Rescue Jenny McCarthy and her dimmer than dim boyfriend comedian and actor Jim Carrey. Unfortunately, it is a topic that is unlikely to go away. We’ve all speculated why the anti-scientific emotion-based notion that vaccines somehow must cause autism persists in spite of mountains of evidence to the contrary, but I think the question goes much deeper than that because it’s not just about vaccines. The anti-vaccine movement is but one of the most visible components of a much deeper problem in our public discourse, a problem that values feelings and personal experience over evidence, compelling stories and anecdotes over science.
I’m referring to the Oprah-fication of medicine in America.
An Anesthesiologist’s Perspective
The late John Bonica (1917-1994), one of the great anesthesiologists of the 20th century, has been called “The Founding Father of the Pain Field.” He developed this interest while treating wounded soldiers at Fort Lewis, Washington, during WW II. Shortly thereafter he became a pioneer of epidural analgesia and other forms of safe pain relief for labor and delivery. In 1947 he created the first multidisciplinary pain clinic, at Tacoma General Hospital, and in 1960 brought it to the University of Washington School of Medicine when he became the founder and first chairman of its Department of Anesthesiology. In 1953 he published the first comprehensive textbook on the subject of pain, the 1500 page Management of Pain. In 1973 he founded what is now the largest professional organization devoted to pain relief, the International Association for the Study of Pain (IASP).
Dr. Bonica was born in Italy. He came to New York City with his family when he was 11. His father died four years later and he became the major breadwinner for the family. He competed in wrestling while in high school and won both the New York City and state championships. Later he worked his way through college and medical school by wrestling professionally under the pseudonym ‘Johnny (Bull) Walker’, and according to several sources he was the “Light Heavyweight Wrestling Champion of the World.” He continued to wrestle while in the army but concealed his military identity by becoming, in the ring, the “Masked Marvel.”
At the time of the burgeoning Western interest in acupuncture in the early 1970s, Dr. Bonica became the Chairman of the Ad Hoc Committee on Acupuncture of the National Institutes of Health (NIH). In 1973 he was “selected by the Committee on Scholarly Communication with the People’s Republic of China of the National Academy of Sciences to be a member of the first official American medical delegation to visit the People’s Republic of China, and was given the responsibility of evaluating acupuncture and anesthesia as practiced in that country.”
We’ve written a lot about anti-vaccine zealotry on this blog, as Steve and I take a particular interest in this particular form of dangerous pseudoscience for a number of reasons. One reason, of course, is that the activities of antivaccine groups like Generation Rescue and its spokesmodel since 2007 (Jenny McCarthy, a frequent topic on this blog) have started to frighten parents about vaccines enough that vaccination rates are falling well below that required for herd immunity in some parts of the country. Indeed, McCarthy, at the behest of her handlers in Generation Rescue, serves up a regular “toxic” brew of misinformation and nonsense about vaccines, most recently in a video that was the subject of a post by Val Jones about her unbelievably pseudoscience-laden blather. Truly, it has to be seen to be believed. Meanwhile, Generation Rescue has sent McCarthy on a media propaganda tour for her latest antivaccine pro-quackery book and set up a misinformation-laden propaganda site called Fourteen Studies (blogged about by Steve Novella, Mark Crislip, and, of course, yours truly) in which they attack well-designed studies that have failed to confirm their pet idea that somehow, some way, vaccines must be the cause of autism. And, when their pseudoscience is criticized, the antivaccine movement has a tendency to launch vicious ad hominem attacks, as they recently did against Steve Novella and have done multiple times in the past against me.
However, there is one other consequence of the antivaccine movement, however, and it is at least as important as the public health implications of the potential dimunition of herd immunity caused by the fear mongering of groups like Generation Rescue. That consequence is the cottage industry of “biomedical” treatments to which desperate parents subject their children. Gluten-free diets, chelation therapy (which has caused deaths), hyperbaric oxygen chambers (a recent story described a child getting severely burned when one of these caught fire), autistic children have been subjected to it all. But of all the biomedical woo to which autistic children have been subjected, one form of woo stands out as being particularly heinous. Indeed, I agree with our fearless leader Steve in characterizing it as an “atrocity.”
I’m referring to Mark and David Geier’s favored “treatment” for autistic children, namely a drug called Lupron.
I’ve been fairly quiet about Jenny McCarthy’s campaign against childhood vaccinations, partly because Dr. David Gorski has covered the issue so thoroughly already, and partly because of my “do not engage” policy relating to the deeply irrational (i.e. there’s no winning an argument with “crazy.”) But this week I was filled with a renewed sense of urgency regarding the anti-vaccinationist movement for two reasons: 1) I received a personal email from a woman who is being treated with hostility by her peers for her pro-science views on vaccines and 2) a friend forwarded me a video of Jenny McCarthy speaking directly to moms, instructing them to avoid vaccinating their kids or giving them milk or wheat because of their supposed marijuana-like addictive properties.
I’ve written before about clinical trials as one place where “the rubber hits the road,” so to speak regarding the interface between science-based medicine and actual medical practice. Another critical place where an equal amount of rubber hits an equal amount of road is how the medical system and the law deal with the medical care of minors. In the vast majority of cases, parents take their children to physicians ostensibly practicing science-based medicine and, more or less, follow their advice. One of the more common areas where there is resistance to science-based medicine is, of course, the issue of vaccination, which I and other bloggers at SBM have written about extensively. Another issue, which has not yet been touched upon on this blog, is what to do about parents who refuse chemotherapy for their children with curable childhood cancers or children who refuse chemotherapy whose parents either agree with them or are unwilling to do the hard work of convincing their children that they must undergo therapy. Most often, the reason cited by such “chemotherapy refuseniks” is either religion or a desire to undergo “alternative” therapy rather than conventional therapy. One such case, a particularly high profile one, has been in the news over the last couple of weeks. In this post, I plan to discuss the case of Daniel Hauser, a 13-year-old boy from Minnesota with Hodgkin’s lymphoma who, after one round of chemotherapy, is currently refusing further therapy. This case ended up in court (as these cases often do) and led to a decision that is likely to satisfy no one (as these cases nearly always do).
Before I discuss Daniel’s case in more depth, however, let me make one thing clear. From my perspective, competent adults have the right to choose whatever treatment they wish–or to refuse treatment altogether–for virtually any condition. The sole exception that I can think of would be the case of a highly contagious infectious disease, where society has a right to prevent epidemics and, if necessary, quarantine someone who refuses treatment and refuses to avoid interaction with others. Note, however, that the right competent adults to choose whatever quackery they desire should in no way be construed to imply that quacks have any sort of “right” to provide them with quack treatments. The reason is that providing such treatments inherently involves making claims for them that are not supportable by science. In essence, selling such treatments involves fraud, even if the practitioner is a true believer and just as deluded about the efficacy of the woo he is selling as the person buying it is. Be that as it may, if a competent adult wants to refuse treatment and understands the consequences, then I will call him a fool if what he has is a potentially very curable disease like Hodgkin’s disease and chooses bogus (word choice intentional) alternative “cures” instead, but it’s his call.
However, from my perspective (and that of the law in most states) the key to such self-determination is that the person must be informed of and understand the consequences of his actions, and there are three components to this understanding. First, of course, is mental competence; i.e., no serious untreated mental illness that impairs a person’s ability to perceive reality can be present. Untreated schizophrenia, for example, can definitely interfere with a person’s ability to evaluate information. The second is the ability to understand the disease and what the consequences of treatment or doing nothing are. That is why adults with mental retardation severe enough to prevent them from understanding are in general not considered competent to make such decisions. Indeed, it is why parents are expected to act on the behalf of their normal children to make such decisions. Finally, there is informed consent. A person refusing treatment must be told the consequences of his refusal and acknowledge them. Whether he believes what he is told is another matter, but it is not up to physicians to force treatment on someone just because that person doesn’t believe what they tell him, as long as the first two conditions are met.
The conflict arises when a parent decides to pursue quackery for a life-threatening but potentially curable illness for a child or a child refuses therapy. It is on such occasions that society as represented by the state has a compelling interest in overriding the parent’s decision and making sure that the child gets the best science-based treatment available. It is also a situation when parental rights, rights of self-determination, and the legitimate interest of society in protecting children can all clash in a most chaotic and nasty manner. That is exactly what is at issue in the case of Daniel Hauser, as described in a news report of the testimony given in his case: