Caplan: Zealot's Bad Study Leads Autism Community Astray for A Decade
As Arthur Caplan tells us in this week's MSNBC column, one bad study and a zealot's pursuit of a theory can lead an entire movement and entire generation of parents astray. This is, in effect, what Andrew Wakefield did with his now thoroughly debunked theory about the link between MMR vaccines and autism.
To read the column on the web, click here or read it in its entirety below.
Summer Johnson, PhD
How a zealot's word led us astray on autism
A dozen years ago, a British physician named Dr. Andrew Wakefield published a paper in the prestigious medical journal The Lancet that did immeasurable harm to children.
Wakefield, who back in 1998 was working at London's Royal Free Hospital, claimed in the article that the vaccination of 12 children with measles/mumps/rubella (MMR) vaccine had caused a reaction in their bowels that caused autism.
At a press conference shortly after the paper came out, Wakefield urged parents not to give their children the combination vaccine.
The British press went crazy over the report. The word and the fear quickly spread around the world.
Since the controversial paper was published, British parents abandoned the vaccine in droves, leading to a resurgence of measles. Vaccination rates for measles have never recovered, and there are outbreaks of the disease in the U.K. every year.
And across the globe, millions of parents who choose to follow their own doctors' advice and vaccinate their children have had to face the anxiety of an alleged link to a dread disease.
All this despite the fact that no scientists were ever able to replicate Wakefield's findings.
Yesterday, The Lancet, after years of investigations, lawsuits, press complaints and accusations, took the unprecedented step of withdrawing this 12-year-old article as misleading and false.
Why did The Lancet finally act? Because the British board that licenses doctors recently concluded that Wakefield had "shown callous disregard" for the children in his study and had "abused his position of trust" in doing his research. In language I have almost never seen from a disciplinary body, the General Medical Council added that Wakefield acted "dishonestly," was "misleading" and "irresponsible" in the way he described the findings of his tiny study about the danger of MMR vaccine in The Lancet.
As it turns out, for the study Wakefield took blood samples from children at his son's birthday party, paying them 5 pounds each.
The language was probably not strong enough. The Wakefield paper killed children and left others deaf and disabled from preventable diseases as their parents, in an effort to avoid autism, left them unvaccinated.
Vaccination has always had its critics. Using needles to put things into children's bodies has always left some parents uneasy. And the epidemic of autism has left other parents searching for some cause, some agent, some substance that might be to blame.
Vaccination became a prime suspect because it occurs so close to the time at which autism used to be first diagnosed. And Wakefield's paper was all the ammunition anti-vaccinators needed.
Wakefield's study was both tiny and flawed. Nearly all of his 13 other co-authors eventually bailed out on the article. Still, the press could not resist from spreading the scary news over and over again, even though no one could get the same findings as Wakefield did. And Wakefield himself, supported by a fanatical anti-vaccine lobby that to this day cannot let go of the vaccine-autism connection, continued to spread fear of vaccines right up to the time of his disciplinary hearing.
Some will try to portray Wakefield as a martyr, sacrificed for the profits pharmaceutical companies make from vaccines. But the profit from childhood vaccination has always been a very small part of Big Pharma's big profits. The companies still in the childhood vaccine business generally stay there from a sense of duty to the public health not greed.
Wakefield is no martyr. He is a scientist who would not give up on his theory no matter how much evidence accumulated that vaccines are not linked to autism. And that makes him guilty of letting his zealotry blind him to the harm avoiding effective vaccines did to many vulnerable children.
The bitter lessons of the decision to expunge the Wakefield paper from medical history are clear. No single, small study should ever be taken as the basis for a massive change in anyone's behavior when it comes to your health and that of your family. And the desire to find some reason, any reason, for the plague of autism should not blind us to the fact that the evidence clearly shows that vaccination is not the culprit.
It's My Baby and I'll Smoke If I Want To! Except Florida.
How far can a court, and by extension the state, go to protect the health and well-being of the unborn? In Florida, it would appear--much further than they have ever gone before.
A Florida court crossed the line by forcing Samantha Burton to be hospitalized to prevent her from smoking during her pregnancy. State courts have forced mothers who are pregnant to be involuntarily tested, hospitalized and bedridden to prevent them from engaging in a wide range of unhealthy behaviors in the past--most notably the use of illicit drugs like crack, cocaine, and alcohol.
Burton, who entered the hospital at 25 weeks pregnant for premature labor, was forced by court order to stay in the hospital, on the grounds that "state has a right" to ensure that children receive medical treatment which is necessary for the preservation of life and health", said a Leon Circuit Court judge.
Now, never mind that Burton had two children at home who ALSO needed caring for that this involuntary hospitalization prevented. And never mind that at 25 weeks her fetus is not a CHILD (in my view)--this is Schiavo country, after all. And never mind that bed rest is not medical treatment nor is having a mother go into nicotine withdrawal.
With all of those caveats, Burton claimed she was not a heavy smoker and had been having prenatal care throughout her pregnancy. So exactly, what was the state protecting this fetus from exactly?
Sadly, Burton's baby was stillborn just a few days later. Why? We'll never know.
But this leaves open the real question: with what real evidence did they make this claim? If in fact this case were to set a precedent, then all women who are light to moderate smokers, who are receiving prenatal care who are experiencing premature labor had better steer clear of the hospital for fear of incarceration in their local hospital until their child is born.
Worse yet, if you drink coffee, have eaten a bite of fish, or even looked twice at a piece of blue cheese, you are suspect as well. If you don't live in Florida, don't think you are safe, don't forget that this is just the logical extension of incarcerating women suspected of being on crack to protect "crack babies" which started in South Carolina 11 years ago (see Ferguson v. City of Charleson or Larry Gostin's piece on the subject).
It is clear, at least based on the facts here, that the Florida court exceeded its power to protect the welfare of a child and has set a frightening precedent. Let's hope that the appellate court will overturn the lower court's decision and leave pregnant women free to make their own, albeit healthier, decisions.
Summer Johnson, PhD
"Extraordinary Messiness"
Hollywood has taken up orphan diseases before--remember "Lorenzo's Oil"? And bioethics movies generally have been increasingly common, even just in the last year. Think "My Sister's Keeper". So why all the fuss about "Extraordinary Measures"?
But maybe its the star power, maybe it's actually that it's a decent movie (although very few have said so except New York Magazine), but Extraordinary Measures is getting a great deal of attention as the father-turned-biotech startup investor-turned underdog against the pharmaceutical industry story has hit the big screen.
The only part that is of interest to me about this movie is that it has put a bright light on the path to drug development--and that it is anything but smooth and fraught with politics, financial calculations, and very little to do, ultimately, with saving the most vulnerable and sick among us.
For those of us in bioethics, you are probably saying "Um, yeah, tell me something I don't know," but for the general public who often rarely think about where their medications come from any further beyond the pharmacists counter, I would hope this film would be an enlightening view into the (sometimes dark) underbelly of R&D.
Moreover, the notion that even in this day and age, with all of our medical technology and the trillions we spend on healthcare each year, that there are (even very small) populations of children or adults whose conditions are "orphans" because developing treatments for them will not have significant enough return on investment, I'm guessing, would be as shocking to many Americans as it was to John Crowley when he learned that his children had the obscure "Pompe disease".
Ultimately, this movie is likely to join the ranks of other bioethics and pharma movies for the purposes of teaching and discussion, but one hopes that it will be remembered for offering a unique perspective on the extraordinary complications and messiness in pharmaceutical research and development involving orphan diseases.
Summer Johnson, PhD
Ashley X Revisited: Fost and Lantos Debate on the Bioethics Channel
This month's issue of The American Journal of Bioethics features a Target Article by Diekema and Fost articulating their defense of the Ashley X procedures. Multiple commentators, including Dr. John Lantos, take issue with their claims, arguing that growth attenuation and the removal of reproductive organs for those with developmental disabilities is simply indefensible.
This week on The Bioethics Channel, the debate between Fost and Lantos jumps off the page and onto the soundwaves with Lorell LaBoube moderating in "Ashely X Revisited". The back and forth between the two is engaging in this unique format which deserves a listen.
Click here to go to The Bioethics Channel.
Summer Johnson, PhD
Did Anyone Know It Was National Vaccination Week?
Over on the Practical Bioethics blog, I asked the above question today, based on a story live from Kansas City, MO.
The answer: I didn't. Moreover, I argued that if you haven't had your H1N1 vaccination by the time the third wave of influenza came around, it's your own darn fault when you get sick. (Although the royal "we" will still foot the bill....)
It's either provocative or just practical. It seemed to fit.
Summer Johnson, PhD
Before It Even Hits The Front Page....Sobsey Comments on AJOB's First Issue of 2010
AJOB's first issue of 2010 is already off to a roaring start, making waves and stirring up controversy before it can even be posted on the front page of bioethics.net!
AJOB starts off its 10th anniversary year with a bang with a highly contentious article by Diekema and Fost on the Ashley X case and their continued defense of the growth attenuation and sterilization procedures performed on that young girl.
As Sobsey notes in his blog post yesterday, "thankfully, the American Journal of Bioethics provided an opportunity for peer commentary. Of course, not all the commentary directly opposes the procedures, but most of it does."
In addition, this issue contains target articles on a comparative study on CPR/DNR policies in the US and the UK and the featured cover story on pharmaceutical detailing and the American Association of Medical College's policy on it by Thomas Huddle.
Check out bioethics.net later today to see the full TOC, our great cover, and to read more about AJOB's first issue of 2010!
Summer Johnson, PhD
Time for the Tubes to Be Tied?
A Massachusetts woman, Tessa Savicki, 35, is suing the physicians, nurses and the medical center she says tied her tubes without her consent after the birth of her ninth child. She thought they were putting in an IUD, but instead they performed a tubal ligation, reports the Boston Herald. According to Savicki, the ligation was done without her consent.
Savicki has been attacked for being a single octo-mom plus one (of course not all at one time) who is on public assistance and who now is outraged at the "medical mistake" made by the medical center. Savicki has been pummeled on her Facebook page by those who say she has no right to have so many children and that she should in fact have had her tubes tied long ago.
But who are these moralizers to tell her when her reproductive rights end? Many have and would argue that her reproductive liberties ended when they began to place burdens upon the state (the state being those of us who foot the bill for her nine children). Savicki argues back in defense that eight of her nine children were conceived in committed relationships. Not committed or stable enough to be able to support them without state assistance.
In reality, though, in this day and age, unless you are a multi-millionaire--who could support nine children? Jon and Kate with their eight made millions on reality TV--they could afford theirs (even post-divorce).
But seriously, Savicki shouldn't be attacked for being on public assistance. She should be criticized for not availing herself of the extensive Planned Parenthood centers around the state of Massachusetts where she could have received birth control or other forms of contraceptives to prevent her from having nine children. It's not the use of state resources that is the problem, it's the quality of life for those nine children that concerns me. The quality of life at home. It's the kind of life that even state assistance can provide for nine children and a single mother that worries me. Perhaps Ms. Savicki should have thought about that before having child 5 or child 7 or child 9.
The moral failing is not in taking the assistance; it was in not thinking through the quality of life and the futures of her first, second, third, and fourth child as she proceeded with subsequent pregnancies.
Now, does this justify physicians performing medical procedures upon her without her consent? Of course not.
Moreover, we don't know if there were good medical reasons for the tubal ligation.
As the facts come out, we will learn more, but for now. Let's be clear about where the moral responsibility lies.
Summer Johnson, PhD
Nurses, Doctors Rank Among The Most Trusted Professionals in Society. Who's At The Bottom? You Guessed It. Joseph Lieberman and the Gang.
You might be surprised to learn that nurses (and healthcare professionals generally) are among the most trusted members of society, according to the annual Gallup "Honesty and Ethics of Professions" poll. Evidently, Americans believe that health professionals don't lie (except when they think it's good for you, if you read the most recent AJOB, or if you are Dr. House).
On the other end of the spectrum are politicians, the pond scum of the honest and ethics poll. They rank alongside, according to The Hill Blog Briefing Room, such lowlifes as the proverbial car salesmen, evil HMO managers, and Wall Street stockbrokers!
Where has our trust in American government gone? It appears to have gone right down the toilet with the public option, Medicare starting at age 55, and a whole string of political compromises and proposals that might have made health reform possible.
In order for trust to be restored, politicians will have to start making good on their promises and start delivering results to the American people. Perhaps they will start by figuring out a way to provide health care for all Americans.
Summer Johnson, PhD
Summer Johnson Talks about AJOB's December Issue
On the Center for Practical Bioethics' blog, you can hear me talk about the ethical questions raised by the use of placebos in clinical practice and the other topics addressed by the Target Articles in the December issue of AJOB, including life extension and the moral responsibilities of journal editors to have a policy for publishing animal studies.
In addition, I discuss what lies ahead for AJOB in 2010. In particular, we discuss the upcoming January issue for AJOB and AJOB's newest additions---AJOB Neuroscience and AJOB Primary Research.
To learn more, click on the link above. To hear more of the Center for Practical Bioethics' podcasts, click here.
Summer Johnson, PhD
Come One, Come All--To Neuroscience Boot Camp!
Our colleagues at the University of Pennsylvania are having another "Neuroscience Boot Camp". To learn more, read below or click the link above.
Summer Johnson, PhD
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Calling all bioethicists who'd like to know more neuroscience!
Penn is once again offering Neuroscience Boot Camp, a ten-day intensive program for academics and professionals in bioethics, law and other fields who want to be able to work knowledgeably with neuroscience. Last summer's Boot Camp was a great success, with lectures, panel discussions, lab visits and breakout groups, and we are planning to make this one even better!
Here is what some of last year's campers had to say:
"Neuroscience boot camp was fabulous. I got a basic overview of the field from first-rate researchers who also happen to be superb teachers. They were as open to answering basic questions about the science as they were eager to engage the larger philosophical and legal questions that brought many of us to camp. Truth be told, it wasnt just edifying. Spending time with a bunch of curious professionals who wanted to learn some basics about a field other than their own was just really, really fun." -- Erik Parens, Ph.D., Senior Research Scholar, The Hastings Center
"Martha's leadership and lectures have been absolutely fantastic, and
the other lectures, field trips, and lab demonstrations have been
equally wonderful. I cannot imagine a better way to improve my
understanding of neuroscience and am eager to bring my new knowledge to
bear on my scholarship in law and the medical humanities." -- Stacey Tovino, JD, Ph, Director, Health Law and Policy Center, Drake University Law School
