White Coat Underground

In relation to my recent bits about Jenny McCarthy and her antivaccination nonsense, reader Isabel asks the following:

I’ve been following this discussion for awhile, PalMD, and while I agree that JM sounds like a nut, and while I feel sorry for her kid for being stuck with her as a mother, it’s hard for me to see her as the evil force she is being portrayed as.

For starters, through no fault of her own, she’s obviously not particularly bright, which makes it hard to take her seriously, in either a positive or negative way. She seems like countless other neurotic women who are desperate for help with her child’s disorder, listening to charlatans and becoming a believer who wants to then spread the word.

Shouldn’t protests be focused on the dispassionate business people who are backing her up, who profit from stirring up controversy and who don’t have autistic children? And the doctors and labs who go along with the poop analyzing, etc, preying on parents fears? I mean, who is giving the lab the orders? This must be an arrangement through her doctor, no?

I have heard some complaints directed at Oprah, but they are much more polite, it seems, and I have only heard (please correct me if I’m wrong on this) JM specifically blamed for kids deaths and other horrible things…she seems more like a sad, almost pathetic pawn to me.

Now, I am not an ethicist, and while I do know something about medical ethics, more general cases are a bit outside my comfort zone. Still, let’s take a look at the issues. If we’re lucky, a real ethicist will stop by.


Jenny claims an expertise based on her personal experience. Whether one views themselves as an expert is largely irrelevant, unless others so christen them. In Jenny’s case, various fake experts have helped promote her status as an expert (making her a 2nd generation fake expert?) and she has embraced this status.

Being a public figure confers a certain status in our society, whether or not it should. It gives one great reach and influence. While Jenny’s putative lack of intelligence certainly makes her susceptible to having her status used by others, it does not absolve her of her responsibilities. She has made a conscious choice to use her status to spread a message, and has chosen to listen to some experts over others. The moral culpability is hers.

It is difficult (and probably useless) to create a culpability scale for the people involved in absurd and dangerous medical claims, but the reader’s point is well-taken, so I’ll do it anyway. When it comes to medical issues, the only thing consistent about Oprah is her own inconsistency. It appears that she christens experts based on her personal preference rather than any objective criteria. This is a problem. Oprah’s influence is inversely proportional to her ability to choose good experts, which is a troubling trend. One thing she is good at is picking a winner; Dr. Phil may or may not be a good therapist, but he’s great TV. Time will tell whether Jenny is equally lucrative, but Oprah doesn’t pick losers, so we’re likely to be seeing Jenny under Oprah’s banner for a long time to come.

If we are to assign moral culpability based on reach, Oprah wins. If we are to do it by prior responsibility, folks like Jay Gordon win. As physicians, we have a special responsibility in communicating to the public. There are a lot of pieces that I don’t write because of these responsibilities, and the pieces I do write I scrutinize carefully. I’ve pulled pieces that in retrospect seem to violate one or another of my ethical principles. Doctors who disseminate bad medical information may not be breaking any laws, but they are behaving very unethically.

So, Isabel, in criticizing Jenny, Oprah, and Gordon, I perhaps have not made clear the level of ethical culpability I assign to each one. However, sometimes my response is aimed more at the reach and visibility of the culprit than at the level of their moral responsibility. Jenny, as dimwitted as she may be, is visible, and requires an extra dose of smack-down, and while she has been my focus of late, no one who promulgates dangerous medical information will be immune.

Comments

  1. #1 Kalldoro
    May 18, 2009

    I agree with you. Jenny may be dumb and someone may be using her, but that doesn’t absolve her. She’s very visible, lots of people are listening to her and therefore she is having a very negative effect on society. Her nonsense shouldn’t be ignored and I think you’re doing a very good job of writing about it.

    (hey, new reader :P)

  2. #2 PalMD
    May 18, 2009

    Great! Velkomin!

  3. #3 Jay Gordon
    May 19, 2009

    Jenny McCarthy is a smart successful woman whose child happens to have autism. She has chosen to use her celebrity to gain attention from the media for problems she thinks could and should be solved.

    I am a pediatrician with thirty years experience in general pediatrics and a thimble full of knowledge about treating autism. During my years in practice I have formed opinions based on what my eyes have seen and my ears have heard. I think that’s valuable data even without randomization or blinding. I communicate sincerely and honestly my doubts about vaccines, the current schedule and the possibility that vaccines and other environmental influences may increase the incidence of autism in susceptible children. I also acknowledge that future research may prove everything I believe wrong. I just would like to see the studies done and done well.

    Honest doctors have disagreed for as long as there have been doctors. Those with the loudest voices and the angriest arguments have not always been proven right in the long run but they continue to use ad hominem assaults and name calling in their arsenal.

    Orac and his site could be tremendously educational for those of us who primarily practice clinical medicine but there’s a pervasive nastiness there that mitigates against civil discourse. I have long been puzzled by the need for rudeness, disdain and insults from those who purport to have all the facts on their side. Blow me out of the water with facts. Do the same with Ms. McCarthy. But why continue to resort to the methods you seem to espouse above?

    I know that some docs and labs make money from this issue. I, personally do not. Quoting someone who disdains stool analysis diminishes what you could be doing.

    Best,

    Jay

  4. #4 T. Bruce McNeely
    May 19, 2009

    Jay Gordon sez:
    I have long been puzzled by the need for rudeness, disdain and insults from those who purport to have all the facts on their side. Blow me out of the water with facts. Do the same with Ms. McCarthy. But why continue to resort to the methods you seem to espouse above?

    I’ll tell you why “our side” is sometimes disdainful, rude and insulting. It’s because you and Ms. Poo-head HAVE been blown out of the water with facts – but you still go on and on with your bullshit, completely ignoring this little inconvenience.
    Couple this with a rising threat of infectious diseases that could be eliminated if it weren’t for your scare-mongering, and yes, some of us are FUCKING ANGRY.

    Understand?

  5. #5 Jay Gordon
    May 19, 2009

    OK, let me try that tack for a second: T.Bruce, there is no rising threat, just media sensationalizing 70 extra cases of measles among 300,000,000 Americans and a novel H1N1 virus. Ummm, that’s happened a few times before.

    Damn!! I can’t muster up anger and nasty disdain for you. May I try later?

    Best,

    Jay

  6. #6 T. Bruce McNeely
    May 19, 2009

    H1N1? WTF does this have to do with the topic of discussion?
    You realize that there is no vaccine against the new strain of H1N1 (yet)?

    And it’s more than just measles (pertussis, anyone?), and it’s what your misguided activism means for the future.

    The disdain is still on.

  7. #7 Patience
    May 19, 2009

    Jay, it may be in your best interest to acquire more than “a thimble full of knowledge about treating autism (sic)” before you start calling for more studies. How many studies need to be done before your being wrong is acceptable? Rather than whining about the tone, read the information that Gorski and others have collected for easy perusal; if you are an intellectually honest person and doctor, you will give the science presented correct and due consideration.

    Precent does not lead me to believe you are an intellectually honest person or doctor. I welcome you to prove me wrong.

  8. #8 Joe
    May 19, 2009

    Jay Gordon | May 19, 2009 1:48 AM sez “I am a pediatrician with thirty years experience ignorance …” fixed it for you. It’s not the quantity that counts, it’s the quality. Nonsense is nonsense, even if you have believed it for thirty years. In order to be taken seriously, you must provide good evidence, not your anecdotes.

  9. #9 Orac
    May 19, 2009

    Jenny McCarthy is a smart successful woman whose child happens to have autism. She has chosen to use her celebrity to gain attention from the media for problems she thinks could and should be solved.

    No, Dr. Jay. Jenny McCarthy may be successful, but she is not smart. Not at all. Intelligence and scientific knowledge aren’t really necessary for success in show business anyway. In any case, anyone who can make a video like this is about as dumb as a post:

    http://scienceblogs.com/insolence/2009/05/jenny_mccarthy_shows_off_her_knowledge_o.php

    What is really going on here is that the anti-vaccine movement sensed a gullible but brash and obnoxious woman that it could use. Jenny McCarthy, given her previous tendencies towards woo in the form of the “Indigo” movement, gave that to them in spades. With the help of the antivaccine movement, Jenny McCarthy shed her Indigo past, trying to scrub the evidence from the Internet and failing, to be reborn as a “mother warrior” against autism (read: against vaccines).

    And use her it has; she’s exceeded their expectations, particularly by bringing in a much bigger name, Jim Carrey, who (I’ve concluded) is at least as ignorant as Jenny, if not more so:

    http://scienceblogs.com/insolence/2009/04/fire_marshall_bill_discusses_vaccines.php

    I am a pediatrician with thirty years experience in general pediatrics and a thimble full of knowledge about treating autism. During my years in practice I have formed opinions based on what my eyes have seen and my ears have heard. I think that’s valuable data even without randomization or blinding.

    And no one says it isn’t. The problem is that you don’t know what to do with such uncontrolled, single-observer, anecdotal observations. (Hint: You don’t make sweeping statements that vaccines can cause autism.) Such observations as yours can be useful as a starting point, as what we in the science biz call “hypothesis-generating” observations. They can legitimately be used to generate hypotheses for further study.

    But guess what? The questions your observations have brought up have already been studied. Numerous times. By numerous people. In numerous countries. There. Is. No. Detectable. Correlation. Between. Vaccines. And. Autism.

    There just isn’t. It’s been looked for, and no one using rigorous epidemiological studies has thus far been able to find it. The conclusion from this is one of two possibilities. Either vaccines don’t cause autism, or, if they can, it’s such a rare occurrence as to be undetectable in population-based studies of many thousands of children. Either way, science blows the anti-vaccine movement’s claims out of the water.

    Moreover, it’s been explained to you time and time again just how susceptible single observers are to confusing correlation with causation, to mistaking the placebo effect or regression to the mean for a real effect, and to confirmation bias, namely the natural human tendency to remember what supports our beliefs and to forget what does not. Indeed, overcoming such biases and normal cognitive shortcomings is exactly why the scientific method is so critical. As I’ve said time and time again, it is not the scientists who are arrogant. We recognize that we, too, are just prone to the very same shortcomings that every other human being is. Truly, the arrogant ones are not the scientists, but those who make broad, overarching conclusions based not on science, but on “what their eyes have seen and their ears have heard.”

  10. #10 PalMD
    May 19, 2009

    During my years in practice I have formed opinions based on what my eyes have seen and my ears have heard. I think that’s valuable data even without randomization or blinding. I communicate sincerely and honestly my doubts about vaccines, the current schedule and the possibility that vaccines and other environmental influences may increase the incidence of autism in susceptible children.

    Dr. G, I have not been in practice as long as you, but one thing I do know is that my eyes and ears, while good at collecting data, do not connect to a very accurate data processor. The brain is notorious for finding patterns where causation does not exist. This is why the observations of an experienced practitioner such as yourself must be collected in a systematic way and analyzed for real vs perceived patters of cause. It has nothing to do with blinding and everything to do with statistics.

  11. #11 daedalus2u
    May 19, 2009

    Patience, a slight correction to your statement; it isn’t in Jay Gordon’s best interests to obtain more than a thimble full of knowledge. It would only be in his patients’ best interests. If he had more than a thimble full of knowledge, he would know that the bogus treatments he makes money promoting have no basis in physiology, medicine or reality. Keeping himself ignorant he can continue to profit by promoting those treatments. That is why on his home page he can prominently display long discredited crap by non-scientists on thimerosal while making no mention of the real science that shows no effect. If he had two thimbles full of knowledge, he would have to act that much harder to sell his crap; if he could act that well, he could make the big bucks being an actor, just like Jim Carrey.

    He doesn’t want to be taken seriously; he just wants to make a lot of money and doesn’t care if he is right or wrong. If he did care if he was right or wrong he would look more at the science. By “science” I mean what all other scientists mean, what is in the peer reviewed literature, not in glossy pop mags like Rolling Stone.

  12. #12 PalMD
    May 19, 2009

    Daedalus, i’m perfectly willing to take him at his word that he doesn’t profit monetarily from his exploits.

  13. #13 daedalus2u
    May 19, 2009

    PalMD, did you look at his website? Where he sells books exploiting his anti-vaccine ideas?

    What he said was

    “I know that some docs and labs make money from this issue. I, personally do not. Quoting someone who disdains stool analysis diminishes what you could be doing.”

    I presumed what he was saying was that he didn’t make money from stool analysis (though he does have a page on colors of poop). He does make money from “alternate vaccine schedules” and sells plenty of stuff pushing his alternate views. Views which he has based on his “thimble full of knowledge”, not any generally recognized standard of care, not any clinical trials, just by his “experience”, same as Jenny McCarthy.

    In his comment above he says “Honest doctors have disagreed for as long as there have been doctors.” This may be true. Honest doctors have ways of resolving their disagreements, with facts and logic and by running clinical trials and publishing the results. On his website he states:

    “There is no proof that vaccines can cause autism but the evidence needs further research and investigation. The three “vaccine court” cases this year are easily analogized to the early judicial decisions over cigarettes and lung cancer. Again, the proof’s not there against vaccines, but dismissing the possibility and the evidence based on a few court cases is bad law, bad science and bad medicine.”

    There is a not a bit of evidence that vaccines cause autism. There is much evidence that vaccines are completely unrelated to autism. No scientist is dismissing or has dismissed evidence based on a few court cases. For Jay Gordon to suggest otherwise is deliberately misleading, and impugns the honesty and integrity of every MD, scientist and researcher who disagrees with him. Honest doctors may disagree, Jay Gordon is not an honest doctor. Honest people trying to understand will look at all the facts, not just the ones that fit their beliefs. Jay Gordon has disregarded the facts he doesn’t like in favor of his beliefs.

    It may play well with his anti-vaccine base, it is disingenuous and plainly demonstrates that he is playing fast and loose with the facts. Facts that he could easily get and (presumably) understand. He chooses not to obtain those facts and/or not to understand them. I can only conclude that he doesn’t want to know what the facts are. He not only wants to have his own opinion, he wants to have his own “facts” to base that opinion on.

    This is why dealing with denialists such as Jay Gordon is so frustrating. They deny reality in favor of their own wishful thinking. No amount of facts will dislodge an opinion not based on facts in the first place.

  14. #14 Ramel
    May 19, 2009

    From Jay gordon: “Orac and his site could be tremendously educational for those of us who primarily practice clinical medicine…”

    Is one of us lost? I thought this was PalMD’s place??? And “Blow me out of the water with facts”? It’s been done over and over again, there is nothing left but the shouting.

  15. #15 Terrie
    May 19, 2009

    Gordon doesn’t know much about autism, and he doesn’t know much about law either. The first case where it was said that, yes, cigarettes cause cancer, was in 1963. The issue on which that case turned was not the jury’s fact-finding, but how the law applied in that circumstance. It is, in fact, a 180 from what happened withe vaccine courts.

  16. #16 Prometheus
    May 19, 2009

    Dr. Jay whines:

    “I am a pediatrician with thirty years experience in general pediatrics and a thimble full of knowledge about treating autism.”

    While I realize that Dr. Jay is employing false modesty when he describes his “thimble full of knowledge”, it appears that he is inadvertently telling the truth. If he understood better what autism was – and, more importantly, was not – he might be better equipped to “speak truth to power” and tell his celebrity clientele that their boutique beliefs about autism are not supported by the data.

    “During my years in practice I have formed opinions based on what my eyes have seen and my ears have heard. I think that’s valuable data even without randomization or blinding.”

    Dr. Jay might think that, but he’s be wrong. People – even “experienced pediatricians” – routinely see patterns where there are none. That’s why we need randomization and blinding – to keep from fooling ourselves that the patterns we imagine are real.

    “I communicate sincerely and honestly my doubts about vaccines, the current schedule and the possibility that vaccines and other environmental influences may increase the incidence of autism in susceptible children.”

    As has been shown innumerable times, sincere and honest people can be sincerely and honestly wrong.

    “I also acknowledge that future research may prove everything I believe wrong.”

    Yes, but do you communicate that fact to your patients? Do you tell them that your “beliefs” are not supported by any data apart from what your “eyes have seen” and your “ears have heard”? Do you tell them that, in fact, the data support the opposite of what you “believe”? I bet if you told them that, they might not be so willing to “believe” with you.

    “I just would like to see the studies done and done well.”

    But will your “beliefs” allow you to see the results of the studies as anything but “flawed”, “biased” or “corrupted” if they don’t agree with you? You won’t acknowledge the data of the studies that have been done – why should anyone do more “studies” in order to convince you?

    Dr. Jay, are you going to end up as one of those sad old physicians lamenting how people “these days” don’t believe in bland diets for ulcers and instead treat them with antibiotics, instead?

    Dr. Jay may be a hopeless case. He’s shown that he’s too set in his ways to change and that he won’t “believe” anything that disagrees with his pre-conceived notions.

    If he were simply uneducated in science or medicine, I would suggest that we try to educate him. If he were too old or senile to change from his set ways, I would suggest that we pity him.

    As he is neither uneducated nor mentally infirm, the best solution may be to scorn him and possibly shame him into changing.

    Prometheus

  17. #17 khan
    May 19, 2009

    3 Jenny McCarthy is a smart successful woman whose child happens to have autism.

    She went on national TV & claimed to have ‘cured’ her child. I she lying now, or then?

    And if ‘vaccine caused autism’ can be ‘cured’ by a simple diet change, what’s the problem?

    I really with you assholes would get your stories straight.

  18. #18 Tsu Dho Nimh
    May 19, 2009

    Dr. Jay’s site says, “The three “vaccine court” cases this year are easily analogized to the early judicial decisions over cigarettes and lung cancer. Again, the proof’s not there against vaccines, but dismissing the possibility and the evidence based on a few court cases is bad law, bad science and bad medicine.”

    Jay, you blatherskite, using same scientific method that analysed data and built up evidence that smoking has a strong correlation with lung cancer and heart disease, scientists in several countries have analysed data and failed to find any correlation between vaccination and autism.

    It didn’t come up with the answer you wanted, but that’s the way the data landed.

  19. #19 DebinOz
    May 20, 2009

    Dr Jay’s patients would probably be the most biased bunch to begin with, and of course would be much more likely to report ‘improvement’ in their children’s autistic behaviour, because that is what they want to see. I bet they would tend to believe this stuff before they go and see Dr Jay.

    Parents such as myself, who are not woo-driven and who can read the scientific literature themselves, would not even take their children for a consult with him.

    I really feel sorry for the children (and I guess their parents), when the family is searching for something or someone to blame, and think that there is a ‘cure’.

  20. #20 Dr. Free-Ride
    May 20, 2009

    Ping!

  21. #21 antipodean
    May 20, 2009

    Dr Gordon is clearly a round-the-wrong-way type of physician. The sort of physician who’s been told before to go and look up clinical referral bias and stop using his clinical judgement to decide how diseases originate. This is not a Victorian drawing room, Jay. That method is dead. We have science now and therefore people live longer.

    Round-the-wrong-way:

    Normally people notice that their child is sick in some way and take them to the doctor for diagnosis, maybe some guesses as to the likely cause, and if possible for the subsequent treatment to make them better.

    Dr Gordon’s patients have already diagnosed the condition, invented the cause and decided on treatment based on their extensive University of Google clinical judgement. They go to Dr Gordon for affirmation of all of the things they have already determined and to tell him how well their ‘treatment’ is already working. It’s all backarseward from normal.

  22. #22 The Blind Watchmaker
    May 20, 2009

    Facts are stubborn things.

    Fact deniers are even more stubborn.

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