Respectful Insolence

New project: The Ethics of Vaccines

Since I’ve found myself drawn into blogging about vaccines and the antivaccination movement so much, I was interested to learn of a new project dedicated to discussing the ethical issues involved with vaccination being launched at the University of Pennsylvania:

The Center for Bioethics at the University of Pennsylvania School of Medicine announced the beginning of an 18 month project to examine the field of vaccine development and use. Plans call for providing an ethical framework to help guide researchers, pharmaceutical companies, public-health agencies, health-care providers, and citizens regarding vaccines and their safe, effective, and ethical use.

The website itself, which appears to be more of a blog, can be found here, with an introduction:

…our hope is to create an information clearinghouse (of sorts) on all things vaccine-related, compiling in one place important news, perspectives, and features that address the state of vaccination both in the United States and worldwide. We’ll offer our perspectives sparingly, only to provide context or balance to the stories we cite.

There’s some interesting stuff there already. For example, they’ve already weighed in on the thimerosal/autism controversy, specifically, RFK Jr.’s recent resurrection of the issue:

What all could probably agree on is that the CDC decision to remove thimerosal in 2000 sent a mixed signal, since the evidence then (and now) cited by the medical community continues to show zero evidence of a link to autism. ‘If the evidence is so clear, why call for its removal?’ is a reasonable question to ask. What seemingly was an attempt to end the controversy by removing a non-essential ingredient has actually had the reverse effect, increasing skepticism and thoughts of conspiracy among those inclined to think in such a way.

Indeed. The CDC was damned if it did and damned if it didn’t. Because the hysteria was reaching levels that were frightening parents, threatening a lowering of the vaccination rate, it was recommended that thimerosal be removed from vaccines, even though there wasn’t then and isn’t now any scientific evidence linking thimerosal to autism. After all, it is in most cases a nonessential ingredient, even though it is very useful for preventing contamination of multi-dose vials. Unfortunately, that very recommendation fed the conspiracy mongers, who saw it as a validation of their views that thimerosal was dangerous and caused autism and evidence that there was a coverup. However, if the CDC hadn’t made that recommendation, it risked jeopardizing the nation’s childhood immunization programs.

There’s also another interesting post there that puts the decision by the ACIP to recommend flu vaccinations to children between six months and five years, bringing to light an aspect of this decision that I hadn’t been aware of by linking to a Washington Post story about how the death of a four-year-old girl from the flu influenced vaccine policy. It puts a human face on the decision that RFK Jr. so decries:

Very sad, but a must-read. Reading it side-by-side with RFK Jr.’s piece, it’s hard to believe both authors are discussing the same decision by the same group about the same vaccine. (Without wading too far into the murky depths of the thimerosal debate, it’s worth noting that central to earlier arguments about its safety were concerns about the total amount of thimerosal administered from all vaccines together. Now that flu vaccine is the only pediatric product containing it, the position seems to be that any thimerosal is unacceptable.)

One can assume that Jessica’s story alone did not persuade ACIP to change the flu vaccine recommendation, but, amid debates and controversies, it reminds all of us of the real-life consequences of infectious diseases and immunization policy.

There are also some interesting articles on cancer vaccines and impediments to the development of a bird flu vaccine.

According to Jason Schwartz, the Editor of the project:

…a primary goal of ours is to stand apart from the rhetoric and shouting that too often permeate discussions of vaccines, particularly online. We intend to give time to various perspectives (as we already have with RFK Jr and the Geiers), but ultimately to let the facts and the science speak for themselves. We’ll provide context, balance, and links that clarify, complement, and better inform coverage of vaccines elsewhere. Finally, given the focus of our project, we care a great deal about the ethical questions arising from the news — we’ll always raise the issues we see to be relevant and often offer our take as to the solution(s).

In other words, this site should serve as a less vociferous perspective on the issue than Orac usually purveys. I was initially a little reluctant to post a plug, not because I don’t think it’s a very promising blog, but rather because, due to my previous posts on such issues, my mention of it runs the risk of siccing some of the loonier antivaxers on Jason’s site. I hate to do that to such a young site, but they’d find him sooner or later anyway. Besides, discovering and plugging promising new blogs is one of the great pleasures I derive from blogging, particularly now that I’ve achieved a modicum of popularity, such that my mention actually means something. Not nearly as much as PZ, Daily Kos, or Instapundit, of course, but something.

I’ll be adding this one to my blogroll when I revamp it this weekend.

Comments

  1. #1 Michelle Dawson
    March 16, 2006

    Can these people spell “irony”? There would be no “hysteria” if it weren’t for the deliberate dissemination of grossly false, pejorative, alarmist and sensationalist information about autism by major and apparently credible organizations and individuals. Those would include ASA, Autism Speaks/NAAR, CAN, CDC, NIMH and Tom Insel, the MIND, etc.

    And the list also includes Arthur Caplan.

    Dr Caplan made himself popular in some quarters by allowing that some Asperger people really should be allowed to exist, because they might actually be useful. He contrasts this with autistics, who he consistently describes as being appalling. Autism is “really is terrible”, as well as dysfunctional, a disease, a tragedy, etc, resulting in kids who can’t interact or communicate and can only exist in institutions. Having decided we can’t communicate, he apparently has no ethical qualms about deciding our lives aren’t worth living, without actually checking with us.

    He unethically calls autism an epidemic, and states that autism has left parents (all parents) more nervous than they have been since the polio epidemic. He doesn’t qualify this by saying this nervousness is totally unwarranted. There is no evidence of a secular (versus an apparent) increase in the incidence of autism. Autism is not in any way equivalent or comparable to polio. Autism isn’t contagious, though fear and hysteria are.

    His characterization of Asperger’s (good, practically normal) versus autism (bad, diseased and dysfunctional) has no foundation in the science either.

    Important public figures like Dr Caplan who use their authority to spread the word that autism is an epidemic and dreaded disease (as scary as polio!) are the essential ingredients feeding the ambient hysteria about autism. Without this unethically-created hysteria, the vaccine/autism gang would be languishing in trivial marginality, rather than being a regular feature on the vaccine ethics blog run by Dr Caplan’s outfit.

  2. #2 Orac
    March 16, 2006

    Michelle,

    I’ve admired Caplan’s work for quite a while now. I’ve even cited him in my blog before. Consequently, your reaction puzzles me. Perhaps it’s just my ignorance or lack of familiarity with enough of his writings, but in what I have read I’ve never come across any such writings by Caplan. Taking Caplan’s other writings into account, before I could agree or disagree with your assessment I would have to see exactly what it was he wrote or said that so upset you in its full context.

  3. #3 Michelle Dawson
    March 16, 2006

    My comments were about how Dr Caplan has behaved around autism issues. I did not express any views about Dr Caplan’s work in other areas.

    People who are excellent in their domains or fields have been known to totally lose their scientific and ethical bearings when encountering autism. See Niko Tinbergen for a classic example.

    Dr Caplan’s remarks are drawn from a commentary published by him on MSNBC ( http://www.msnbc.msn.com/id/7899821/ ), from a New Scientist article http://www.newscientist.com/channel/being-human/mg18625041.500.html (my brutally-edited-to-the-point-of-unrecognizable response is here http://www.newscientist.com/article/mg18725070.500.html ), a radio show appearance (the Diva linked to it here http://autismdiva.blogspot.com/2005/10/meet-infinite-minds.html , and I seem to have commented), an article in a general magazine http://www.cureautismnow.org/atf/cf/{0FE985F1-B3E3-476B-92EF-73240E60AF4D}/childmagazine0511.pdf , etc (yes, the author of the article does some mitigation by pointing out that autism isn’t contagious, etc, but that does not excuse Dr Caplan’s polio comparison).

    I sent Dr Caplan the original (which was coherent, unlike what was published) of the New Scientist letter, along with some factual material about autism and Asperger’s. His response was that I did not understand what he was saying. Even if I didn’t (let’s say I’m not sophisticated enough to grasp his nuances, which is certainly possible), the information on which he is basing his pronouncements is not accurate. And making ethical judgments without verifying your facts (which in autism starts with applying a lot of critical thinking to a massive volume of published science) is not good practice, no matter how commonplace this is in autism.

  4. #4 Michelle Dawson
    March 16, 2006

    I just spent a long time putting together a response, which then did not appear. And I was not bright enough to save it elsewhere.

    This is a bare bones repeat.

    1. I was commenting on Dr Caplan’s work in autism. I made no comments about his work in any other area.

    2. People who are excellent or brilliant in their domains or fields can and have totally lost their scientific and ethical bearings when encountering autism. Classic example: Niko Tinbergen, whose work in ethology was admirable.

    3. Some sources http://www.msnbc.msn.com/id/7899821/ , http://autismdiva.blogspot.com/2005/10/meet-infinite-minds.html (the radio show), http://www.newscientist.com/channel/being-human/mg18625041.500.html (a letter I wrote in response was published by New Scientist in a butchered form), http://www.cureautismnow.org/atf/cf/{0FE985F1-B3E3-476B-92EF-73240E60AF4D}/childmagazine0511.pdf (yes the journalist does some mitigation by explaining that autism isn’t contagious, etc, but that does not excuse Dr Caplan’s polio comparison).

    I wonder if this one will disappear too. If the other message materializes, so it goes…

  5. #5 David Harmon
    March 16, 2006

    Interestingly, Scientific American‘s April 2006 issue has an article describing the development of rotavirus vaccines, where the first two attempts both had rather scary problems, but persistence seems (so far) to have paid off.

  6. #6 HCN
    March 16, 2006

    I found this MSNBC article on autism and genetic testing.

    I believe that Michelle may be objecting to this paragraph:

    “As genetic testing moves into the world of mental health, we are going to face some very tough questions. Will medicine suggest that any and every variation from absolute normalcy is pathological? How can we draw lines between disabling diseases such as severe autism and more mild differences such as Asperger’s, which may give society some of its greatest achievers? Will parents have complete say over the kind of children they want to bear? And what sorts of messages will doctors and genetic counselors convey when talking about risks, probabilities and choices that involve not life and death but personality and sociability, genius and geekiness?”

    I checked (through Google) for the “epidemic” part, and it brought up the same article. “Epidemic” is in this paragraph:

    “In the past decade, there has been an explosion in the number of U.S. children diagnosed with autism. Less well known is that there has been a parallel autism epidemic in other countries, such as Ireland and Britain. Whatever the reasons for the increase in the number of cases, it is highly likely that autism has a genetic component. Scientists and doctors have not yet nailed down what the genetic contribution to autism is, but the fact that males are far more likely to be affected than females and that autism appears in certain ethnic groups more than others are strong indicators.”

    I notice it says an explosion in the number of children DIAGNOSED with autism. In my biased opinion, this makes me think that the “epidemic” is more of an expansion of the diagnostic criteria, and of parental awareness.

    I can tell that there is a difference in awareness just by the difference in atmosphere from the time 15 years ago when my son was getting diagnosed for his severe speech disability. I got all sorts of “wait and see”, “oh, I heard him talk!” (when all he did was utter ‘kee’) and “my husband’s second cousin twice removed’s nephew didn’t talk until he was 4 and is doing fine now”!

    I gave information about free therapy and evaluation from our local university, the Scottish Rite Speech/Language Clinic, and a couple more agencies to parents of a child in my daughter’s preschool — this kid was severely langauge delayed, but they refused to get him help (he finally got it when they enrolled him for kindergarten and the school district discovered he needed services).

    Though, that is not as bad as the pair of twins that a school speech therapist told me about — about ten years ago their parents enrolled them into a regular kindergarten, without realizing (or at least alerting the school system) that they were both profoundly deaf! (they ended up in the district’s deaf program, which has gone from fairly large to teeny tiny in the past few years, both because of early intervention, cochlear implants and fewer kids getting deafened by mumps, measles, rubella and untreated ear infections)

    NOW… almost any kid with just a hint of delay is rushed off for an evaluation and services! That may be good and bad. At least more eligible kids are getting early intervention… but the bad part is that some kids who possibly fail to qualify for public services may have parents seeking alternative treatment.

  7. #7 Michelle Dawson
    March 16, 2006

    In fact I’ve been barred for whatever reason (technical or otherwise) from posting my response here. In fact I tried to post two responses. Neither has materialized. The saga is here http://www.quicktopic.com/27/H/vJvhV4fDnBgw7/m3703 . Now I can go back to letting other people guess about my objections, seeing as any attempt to provide my sources is not allowed.

  8. #8 HCN
    March 16, 2006

    Unfortunately I’ve also noticed that Scienceblog does have some technical problems. I seemed to have lucked out this time, but I do have a pair of Text files of posts I’ve made during times when it would not let me post.

    I linked to the same MSNBC commentary you did… but I seemed to have interpreted it completely differently than you. Something you could see once you are able to actually able to read the comments.

    (okay, “select all”, “ctrl-C”… and then post and hope it works!)

  9. #9 Orac
    March 17, 2006

    Michelle,

    If you put more than two links in a post, it is held up for moderation. It is one of several measures taken to reduce comment spam, and I only now just saw your comments to approve them. It’s late and I’m too tired to look at the links tonight. I’ll look at them tomorrow or over the weekend.

  10. #10 anonimouse
    March 17, 2006

    I think Michelle’s basic complaint is that severe autism is labeled as “disabling” while Asperger’s is not. That really all depends on what your definition of “disabling” is, and whether you believe (and I do not) that Dr. Caplan was implying that those with more severe autism were unable to be productive members of society..

  11. #11 Michelle Dawson
    March 17, 2006

    My issues are the ones I stated above, not the ones that have been assigned to me by various other people. If I have to reduce my position to a sentence, it would be “Ethicists, including those pronouncing on the nature and worth of autistic people, should base their positions on accurate and impartial information.”

    For clarity, my legal position (at the Supreme Court of Canada) included that autism is a disability. I would link to it but I need a link later on.

    Here’s Dr Caplan:

    “One definition of disease is that it destroys your ability to function – to live independently, hold down a job, feed and groom yourself, and get around. Any disorder that inhibits these activities, which is certainly true in most cases of autistic disorder, is robbing a person of an acceptable quality of life and should be treated, Caplan believes. “I’ve seen [autistic] kids in institutions who can’t tolerate the world,” he says. “Everything sends them into a screaming rage. Not curing them would be a tragedy.”” (from the New Scientist)

    I guess he hasn’t seen http://www.gettingthetruthout.org I wish I could supply another link which might deal with Dr Caplan’s certainties, but then this message might vanish into limbo.

    A position I’ve taken elsewhere is that anyone who invokes “severe” autism or some variation thereof should be required to provide their criteria and when (at what age) they are applied.

  12. #12 killerjabs
    March 17, 2006

    Orac,

    You are so off base on this topic. The CDC did not recommend the removal of thimerosal strictly due to autism concerns. Thimerosal is a toxin and should never have been used in medicine. You cannot argue with that statement. The FDA & CDC realized that they were exposing children to levels of mercury that greatly exceeded the EPA warnings. That is why they made their decision. At least that’s why they should have made their decision. Regardless of how the IOM interpreted those pseudo-science epidemiological reports in 2004, thimerosal still doesn’t belong in medicine.

    The key issue that you are ignoring is that the CDC has not done its job in following through on its own recommendation to remove thimerosal from vaccines. If they had done so, it would not be present in flu vaccines and RFK Jr would have no reason to write nasty blogs about them for their decision to change the schedule for flu vaccines.

  13. #13 anonimouse
    March 17, 2006

    killerjabs,

    You mean for the, what, 20 percent of kids under 5 and pregnant women that actually get the flu vaccine? (and a large percentage of children will get the thimerosal-free version through the Vaccines For Children act)

    News flash – until flu shots are required for daycare and school entry, uptake will be low no matter what the CDC says. And the worst case scenario is that children will be exposed to half the amount of thimerosal by age 5 than they were previously exposed to by age 2.

  14. #14 killerjabs
    March 17, 2006

    Anonimouse,

    Whether or not anyone follows that recommendation is not the point. The CDC is still wrong for not doing more to eliminate thimerosal from vaccines. RFK Jr should not be portrayed as a villain for pointing that out. If his attention to this helps to get the problem resolved then his blog will well be worth the effort.

  15. #15 Harrison
    March 18, 2006

    “Thimerosal is a toxin and should never have been used in medicine. You cannot argue with that statement. The FDA & CDC realized that they were exposing children to levels of mercury that greatly exceeded the EPA warnings. That is why they made their decision. At least that’s why they should have made their decision. Regardless of how the IOM interpreted those pseudo-science epidemiological reports in 2004, thimerosal still doesn’t belong in medicine.”

    Well, I won’t speak for Orac, but I think you’ll find lots of people, including many authorities in the field, who can argue with your line of “thought” there, killerjabs. Thimerosal is a preservative which does help prevent contamination in multi-dose vials. The statements that Thimerosal “should never have been used in medicine” and “still doesn’t belong in medicine” are your opinions. Stating them doesn’t make them facts.

    And apparently you aren’t completely certain of your “facts” themselves. You claim to know why FDA and CDC made a decision and then you say that’s why they should have made said decision, anyway. Please don’t temporize–make up your mind! Are you privy to secret information about the evil FDA-CDC cabal or not?

  16. #16 Catherina
    March 18, 2006

    I have to partly side with killerjabs on this one. The moment it is technically feasable to take a known toxic substance out of something that enters our bodies (think also thimerosal in contact lense fluid, mercury in mercurochrome solution), it should be done. I don’t believe that thimerosal contributed to autism, however, it is a potent allergen in vaccines and since the advent of single doses, it is simply no longer needed as a preservative, so why allow companies to keep putting it into newly licenced vaccines?

  17. #17 HCN
    March 18, 2006

    The need for a preservative depends on the location. Sure, it may not be needed in the industrial west where proper storage conditions can be met… but what about developing countries? Do you expect the same conditions in Nigeria or the Darian (that’s the area between Panama and Columbia) than what would occur in Stuttgart, London, San Francisco, Vancouver, Tokyo or Canberra?

    More information for the World Health Organization.

    Though when it comes to polio and measles, thimerosal is a non-issue. The setback in eliminating polio was due to some unfortunate misinformation broadcast throughout the Kano state of Nigeria. Which led to it being spread to other countries. What are the ethics in disregarding the “third world”?

  18. #18 Ms Clark
    March 19, 2006

    I think it’s unfortunate that Michelle’s main point seems to have been missed. Orac is swamped and so he is excused, in my mind, from following up on Michelle’s main point which is….in my opinion:

    Big, recognizable, reputable organizations and public agencies with huge responsibilities have been suckered into the “epidemic” hysteria, and some of them (the MIND institute of UC Davis, my own school, springs to mind) have actively perpetuated the epidemic idiocy (which aids the antivaxers so efficiently) because it put and currently puts money into their pockets.

    Dr. Eric Fombonne is the world’s premiere epidemiologist in autism, he made the point when speaking AT the MIND institute that talking “epidemic” WHEN THERE IS NO EPIDEMIC, puts money in their greedy little hands.

    Funding for research to stop autism
    because if you don’t stop this epidemic
    you’ll get stuck with someone who should never have been born at all, like Michelle Dawson. (that’s sarcasm)
    You can hear him say it, minus the “greedy little hands” part, which is my editorializing, on the MIND’s website where his presentation is archived on streaming video.

    Dr. Caplan has his ideas. Maybe he’s usually ethical. I have a book that is collection of his columns. He’s not all bad,

    still when it comes to autism,

    without knowing what the heck he’s talking about

    he splits the spectrum into those who are not so bad (like me) and those who should never have been born (e.g., the woman on gettingthetruthout.org ) because he says life is all wrong for them.

    Comparing autism to polio is unethical in the extreme. Dr. Caplan needs a refresher course in ethics. He also needs to apologize and retract his quote.

    No one knows the extent of abuse the autistics he described as screaming etc, have/had received. No one knows if anyone has tried to communicate with them at all. How would you like it if you spent your whole life trying to tell people stuff and they didn’t get it? You might get upset and try to bite people, too. You might end up banging your head against a wall. Not that there is a simple reason for biting and head banging, but frustration is a big part of it.

    The fact is, when people*try* they can find out what autistics are “saying” without words.

    The other thing is that people just don’t want to hear what autistics are saying. That shuts down the communication, too.

    My own child falls well below Michelle Dawson in intelligence, my own child is also physically disabled. I am more normal neurologically than Michelle, probably. I would guess that Michelle is smarter than I am overall. Should I have been allowed to breed and produce a person with an officially “borderline” IQ? Should people like Michelle (who is “classically autistic” and a late talker) have been aborted in case she ended up totally non-verbal?

    Should people pass on the flu vaccine lest they end up with a child who is autistic…

    Better dead than autistic? Dr. Caplan contributed to that thinking.

  19. #19 Ms Clark
    March 19, 2006

    http://www.aspiesforfreedom.com/phpBB2/viewtopic.php?p=16149&highlight=&sid=030c78c264d82db18c16d6cd588fdc49

    Here is the text of the article from New Scientist.

    Dr. Temple Grandin who is held up as both autistic and as way better than merely autistic, could easily have ended up in an institution. She got very, very lucky and chose her parents wisely. They were very rich and could afford a nanny and private schools. If she had been in a poor family, likely she wouldn’t be a professor today. Had she been treated like an animal as a child, she might have been in an institution screaming at people.

    Caplan was out of line in his comments about people who can’t care for themselves need a cure. At what cost? At the cost of the life of the human? How about old Stephen Hawking? How often does he brush his teeth these days? By himself? Sure people should be taught to brush their teeth if they can! It’s not a crime if you can’t and need help.

  20. #20 Catherina
    March 19, 2006

    HCN,

    you are right about vaccine safety in developing countries, but the hysteria is on about thimerosal in US American flu vaccines and while there is no reason to be hysterical there is also no reason for companies to keep putting it into vaccines, except maybe saving money. Is that ethical?
    As thimerosal is a sensitizing agent, it should be avoided in vaccines to ensure that people can keep getting their vaccines. Once you are sensitized to thimerosal you may not be able to go back for your flu shot or FSME booster (unless they are available thimerosal free). Why not avoid this problem from the start by leaving thimerosal out where technically and hygienically possible.

  21. #21 Orac
    March 19, 2006

    I actually can’t read all of the links that Michelle posted because they require a subscription that I do not have. However, looking at Dr. Caplan’s MSNBC piece, I have to say that, while his use of the term “epidemic,” may have been unfortunate, my interpretation is that he makes a valid point about genetic testing for neurologic conditions:

    That said, if you had been Gates’ potential mom or dad 50 years ago, what would you have done if you knew about his abilities and flaws before he was born? Would you have wanted a child that would go on to do great things but would have a hyper-nerdy personality? What if the decision about whether to have a child like him also carried a risk that he might be born with far more serious disabilities? Would you have decided to carry the baby to term?

    The reason I ask these questions is that there is a good chance we will soon have a genetic test for detecting the risk of autism in an embryo or fetus. The development of such a screening tool raises the possibility that parents might one day have the option of preventing the birth of a child with even a mild case of the disorder.

    Given that there abortions are performed all the time in many parts of the world just because a fetus is female instead of male, it is not unreasonable at all to conclude that, should there ever be a genetic test for autism or Asperger’s, there will be many parents who choose to abort on that basis alone. Then the question of the bioethics of such decisions will be very relevant indeed. Caplan asks what the consequences of such decisions will be.

    Michelle, this is probably going to piss you off, but out of respect for you I won’t sugar-coat it: In my opinion, your complaints about Caplan’s MSNBC article, at least, are significantly off-base. Caplan’s use of the word “epidemic” may have been inadvisable. Even so, the bottom line is that your interpretation that Dr Caplan has “made himself popular in some quarters by allowing that some Asperger people really should be allowed to exist, because they might actually be useful” is a strawman argument. That is not at all what Caplan said in that article. What he did do is to ask the question of what would happen if there were a genetic test for autism or Asperger’s and what the ethical questions would be:

    As genetic testing moves into the world of mental health, we are going to face some very tough questions. Will medicine suggest that any and every variation from absolute normalcy is pathological? How can we draw lines between disabling diseases such as severe autism and more mild differences such as Asperger’s, which may give society some of its greatest achievers? Will parents have complete say over the kind of children they want to bear? And what sorts of messages will doctors and genetic counselors convey when talking about risks, probabilities and choices that involve not life and death but personality and sociability, genius and geekiness?

    That is as concise a statement of the ethics of genetic testing for any condition as I have heard. Caplan also expresses concern that such tests could lead to a decrease in the number of geniuses, which hardly sounds like a dis to people with Aspergers. He is not advocating that people with autism shouldn’t be allowed to exist and that those with Asperger’s should.

    I think I understand your sensitivity on this issue (at least as much as someone without autism or Asperger’s can). I can understand your dislike of the polio analogy in the interview you cited (although, I would point out, Caplan was not directly comparing autism with polio). However, when it comes to the MSNBC article, I think you’re off-base.

  22. #22 Michelle Dawson
    March 19, 2006

    I checked very carefully and at no point did I write that the MSNBC article was the only reason for my objections to Dr Caplan’s “ethics”. To say so while describing me as “significantly off-base”, as Orac has, is grossly and deliberately misleading.

    Dr Caplan’s assumptions about autism and Asperger’s are false and have no basis in credible science. False information should not be used as a basis on which to make generalizations about the ethics of genetic testing (or anything else).

    There is now some evidence of one genuine distinction within autism (which is hardly absolute, but does appear to be genuine). But this is not the autism versus AS (or one end of the spectrum versus the other end) entirely deterministic distinction Dr Caplan is promoting and hanging his “ethics” on.

    Dr Caplan could have made his pronouncements about genetic testing for autism without unethically and unscientifically writing off the majority of autistics, without disseminating false information about us that risks being harmful to us, without doing his best to ensure we are feared and dreaded, etc. But instead he has decided to disseminate with his impressive authority the kind of false, scary information about autistics on which the vaccine/autism gang (and many others similar) thrives.

    The current prevalence of non-autism neurodevelopmental disorders (10/1000) is much higher than the prevalence of the specific diagnosis of autism (2/1000). There is no credible reason to consider autism to be uniquely alarming, as Dr Caplan does (scariest thing to hit parents since polio).

    For some real ethics, responding to a very Caplan-type position (except Dr Caplan uses a strict AS/autism distinction) adopted by Temple Grandin, see http://ballastexistenz.blogspot.com/2006/01/temple-grandin-displaying-near.html

    “So, as far as I can tell, the only reason she wants people like me around at all, is because we’re genetically related to people like her and people like her are useful to society. This sentiment seems widespread.”

    Yes, it sure is widespread.

  23. #23 Ms. Clark
    March 19, 2006

    http://www.aspiesforfreedom.com/phpBB2/viewtopic.php?p=16149&highlight=&sid=030c78c264d82db18c16d6cd588fdc49

    Hi Orac,

    The text for the New Scientist article is on the “aspies for freedom” board linked to above.

    “…Another of the movement’s gripes is that social workers often discourage autistic people from having children because of the risk of passing on the trait, says Roberts. Nelson, Roberts and others fear that this type of pressure, coupled with the possibility of prenatal genetic testing (New Scientist, 14 May, p 15), will drag society into the murky zone of eugenics. “We are a minority, but we have the right to have kids like us,” says Roberts.

    Although no definitive genetic or chemical test exists for autism, many scientists believe that one is possible. Autism has the highest known heritability of any complex neurological disease, according to neuroscientist Pat Levitt, director of the Vanderbilt Kennedy Center for Research on Human Development in Nashville, Tennessee. Twin studies have shown that when one member of the pair has autism or a related condition, there is an approximately 70 per cent chance of the other twin being autistic too. This is a higher proportion than schizophrenia, with a 40 per cent chance, and depression, with a 25 per cent chance. Several chromosomes have shown associations with autism, though no specific genes have been found.

    There are also clues to where a cure might come from. Researchers have made progress identifying anatomical differences between autistic and non-autistic brains. In general, children who develop autism have smaller brains at birth but unusually large brains by age 2 or 3. “This might suggest that brain growth in autistic children is peaking earlier,” says Levitt, who also chairs Cure Autism Now’s scientific advisory board. …

    Defining disease

    While no one disputes that autistic people have unusual brain architecture, whether these changes actually constitute a disease, and hence need a “cure”, is hotly debated.

    It depends on how you define a disease, says Arthur Caplan, director of the University of Pennsylvania Center for Bioethics. What makes something a disease rests heavily on society, culture and whether there is a chemical that can manipulate the condition. Erectile dysfunction, for example, became a disease overnight. “Before it was something that people just accepted, then there was a pill, and then it became a disease,” says Caplan.

    One definition of disease is that it destroys your ability to function – to live independently, hold down a job, feed and groom yourself, and get around. Any disorder that inhibits these activities, which is certainly true in most cases of autistic disorder, is robbing a person of an acceptable quality of life and should be treated, Caplan believes. “I’ve seen [autistic] kids in institutions who can’t tolerate the world,” he says. “Everything sends them into a screaming rage. Not curing them would be a tragedy.” At the other end of the spectrum, however, Asperger’s isn’t dysfunctional, says Caplan. It may even enhance some abilities such as mathematics, computer skills and music….”

    I think the big problem with the way Caplan is quote here, lets say the quote accurately reflects what he said…

    He seems to draw a line between Asperger’s who are merely quirky and can live fulfilled lives and be happy, and on the other hand autistics, or maybe a percentage of atuistic people who live nightmarish lives.

    “”I’ve seen [autistic] kids in institutions who can’t tolerate the world,” he says. “Everything sends them into a screaming rage. Not curing them would be a tragedy.””

    He doesn’t know what those kids can tolerate. He doesn’t know if it’s the instiution itself that is intolerable. If you talk to the woman from the ballastexistenz blog you can start to see how evil and institution can be and how the evil can be institutionalized, if you know what I mean….

    Some people deliberately torment the autistic kids/adults to get a reaction from them. The autistic kids are fully aware of what is being done to them, according to “ballastexistenz”. If you start to think about a group of people who can no produce normal social interactions and people whose interactions are constantly misinterpreted and who don’t have normal speech, then you can see how their lives can easily become labelled as worthless and needing a cure.

    The scary thing about Caplan talking “cure” is that up until now many of the “cures” for autism have led to great mental and physical harm to autistics. Also, Caplan is talking both about abortion and “cure”. If people decide that autism is incurable, then the cure for having an autistic child–is not to have an autistic child–which for some would involve aborting a fetus they think will be autistic, or others might deprive someone like me from having children at all.

    People can talk about abortion “rights” all they want, but when they start talking about aborting fetuses for having “X” (femaleness, brown eyes, wrong height, diseased blood, spina bifida…) then immediately it lessens the value of the living people who have those traits.

    Another problem, besides abortion and abuse, is that if people decide that “autistics” are the people for whom life is unbearable and not worth living, they won’t try to help them. They won’t try to give them proper help to learn to communicate and to cope with their sensory issues. People won’t try to help to develop that special “genius” that all (even the most “horrific”) autistics have been shown to have. All autistics have a different kind of thinking that is spectacular, even ones like Caplan described as being in institutions.

    Michelle, I don’t think that Orac deliberately misprepresented your words. I think part of the problem is that he hadn’t read the New Scientist article so he was not privy to some of what you had read from Caplan.

    Orac might not agree with you even if he does read the New Scientist article. He stated his rightlful opinion that he thinks you are “significantly off-base.”

    I don’t think your take on Caplan was off base. Caplan needs to be more careful with how he describes autistics otherwise people can think he is saying that only “asperger’s” people have a quality of life. He doesn’t even recognize that lots of Asperger’s people are suicidal from being constantly abused. Asperger’s people can easily be labelled as people who can’t enjoy life and can’t contribute to society. Already people (wrongly) link Asperger’s with murder and violence.

    I want to restate the problem raised by the blog entry, one of the reasons that there is such resistance to vaccines is that people believe there has been an “autism epidemic.”

    Without the ugly “epidemic” terminology and other ugly terminology coming from Thomas Insel of the NIMH and CAN and the MIND and the and the CDC–

    the antivaxers would have far far less traction in their war on vaccines.

    That’s the sad irony that Michelle pointed out, by terrorizing people with awful descriptions of an epidemic of (empty husk) autistic children (language borrowed from vaccine litigant parents) the CDC (et al) have been their own enemy in this problem with the uptake of vaccines.

  24. #24 Michelle Dawson
    March 20, 2006

    I think I’ve just been anonymously accused of hyperbole http://scienceblogs.com/insolence/2006/03/what_i_did_on_my_long_weekend.php . I don’t appreciate that.

    Whatever the quality of his other work, Dr Caplan is wrong about autism versus AS (I noticed that no one has defended his position from the science) and he is authoritatively contributing to the ambient hysteria which forms the backbone of the vaccine/autism gang. I called that “irony” and I still do. Considering the consequences of this kind of irresponsibility, I was being polite, and understating the case.

  25. #25 Orac
    March 20, 2006

    I think I’ve just been anonymously accused of hyperbole http://scienceblogs.com/insolence/2006/03/what_i_did_on_my_long_weekend.php . I don’t appreciate that.

    And I don’t appreciate your having accused me of being “deliberately misleading.” To me that’s just one small step removed from accusing me of lying. And if “deliberately misleading” isn’t the same thing or nearly the same thing as lying then tell me, Michelle, what exactly did you mean when you chose to use that term?

    Let’s put it this way: I never accused you of any sort of dishonesty, nor would I. I merely pointed out that I thought you seemed to be using a logical fallacy (the straw man argument), which we all can fall victim to from time to time if we’re not careful with even the best and most noble intentions. I was not accusing you of any sort of dishonesty.

    Finally, I stand by my previous statements, because you have made at least two hyperbolical statements. To whit:

    Arthur Caplan made himself popular in some quarters by allowing that some Asperger people really should be allowed to exist, because they might actually be useful.

    And:

    Having decided we can’t communicate, he apparently has no ethical qualms about deciding our lives aren’t worth living, without actually checking with us.

    Neither of these statements sound like “understating” your case to me. Certainly, nowhere in any of the articles you cited did Caplan say or imply that the lives of autistics are “not worth living.” I know from other articles by him that I’ve read that he wouldn’t say such a thing, either. Feel free to prove me wrong.

    I don’t mind vigorous debate and I generally have a fairly thick skin, having toughened it over nearly a decade on Usenet, but questioning my honesty is something that I usually do not ignore. I even tend to agree that Caplan’s use of the term “epidemic” and his indirect comparison with polio were ill-advised, particularly given his prominence in the world of bioethics. However, if you continue to insinuate that I’m somehow dishonest or that I have somehow interfered with your ability to say what you want to say here, I really have nothing further to say to you.

    I’m sorry I felt the need to be so blunt, but I would have been even more blunt if I had not waited a day to respond.

  26. #26 Michelle Dawson
    March 21, 2006

    Orac wrote:

    “And I don’t appreciate your having accused me of being “deliberately misleading.””

    I clearly cited four available and representative sources for my objections to Dr Caplan’s ethics (in fact, I did this twice). This was to conform to your demand that I provide sources and full contexts. You then stated with certainty that I was “significantly off-base” because the one source you chose to address did not support every one of my statements. This is misleading. Because I think you saw the four links the two times I posted them, I do not think this happened because you did not see those links, i.e., accidentally.

    “Straw man” arguments are dishonest. You stated that I had created a “straw man”.

    Neither of the statements you cite from me exaggerate Dr Caplan’s position, which, re AS versus autism, he has repeated many times. My statements come directly from his own words, which I find hyperbolic (at least), apart from inaccurate, unscientific, sensationalist, etc. Dr Caplan states that the majority of autistics (that means me) do not have an acceptable quality of life because we are autistic, and that some of us cannot live outside of institutions (a decision that has been made about me) or do anything but scream, because we are autistic. He contrasts this with AS people, who he describes as merely having nerdy personalities.

    I have understated the false, non-scientific, and irresponsible nature of Dr Caplan’s statements about autistic and AS people, without making any comment about his other work. You are free to defend Dr Caplan’s many statements about autism and AS via the science.

  27. #27 Orac
    March 21, 2006

    I clearly cited four available and representative sources for my objections to Dr Caplan’s ethics (in fact, I did this twice). This was to conform to your demand that I provide sources and full contexts. You then stated with certainty that I was “significantly off-base” because the one source you chose to address did not support every one of my statements. This is misleading.

    No, it’s merely disagreeing with part of your hyperbolical assessment of what was said in those pieces. Just because you presented the sources does not mean that I have to agree with your assessment of those sources. Yes, I read every one of those pieces that I had access to. (Some required a subscription that I do not have.) Just because I partially disagree with your assessment does not mean that I was being “intentionally misleading.” For you to state as much implies to me that you believe your interpretation of those pieces is a fact beyond dispute rather than your interpretation of what Caplan said. What you can’t seem to accept is that my partial disagreement with your interpretation of Caplan’s words does not mean I was being misleading. Two people can look at the same articles and come to different conclusions without any sort of dishonesty being necessary to explain the difference of opinion, you know.

    “Straw man” arguments are dishonest. You stated that I had created a “straw man”.

    You are incorrect in your characterization of the straw man argument as being inherently dishonest. Of course, straw man arguments may sometimes indeed be intentional misrepresentations and therefore dishonest. However, most of the time they tend to be due to sloppy argumentation or an inability or unwillingness to consider seriously one’s opponent’s arguments. As philosopher Julian Baggini put it quite aptly:

    Although the misrepresentations characteristic of straw men can be willful, often they simply reflect how little effort people make to understand their opponents’ points of view. We like the world to be clear cut and simple, made up only of black and white. If we attribute hopelessly inadequate or repugnant views to others, the virtues of our own commitments seem obvious. But if we grant that our enemies have an arguable case, then our own views suddenly do not seem so unassailable, and our opponents not so clearly on the side of the devil.

    The straw man is a logical fallacy, nothing more, and it’s a very seductive one, for the reasons listed above and others. Its use may be dishonest or completely innocent. I was not accusing you of dishonesty, and I’m getting tired of repeating myself on this issue.

    I have understated the false, non-scientific, and irresponsible nature of Dr Caplan’s statements about autistic and AS people, without making any comment about his other work. You are free to defend Dr Caplan’s many statements about autism and AS via the science.

    These two statements of yours hardly sound like “understatement”:

    Dr Caplan made himself popular in some quarters by allowing that some Asperger people really should be allowed to exist, because they might actually be useful.

    And:

    Having decided we can’t communicate, he apparently has no ethical qualms about deciding our lives aren’t worth living, without actually checking with us.

    Those were primarily what I was disagreeing with you about, because nothing in what Caplan says supports your characterization as described in those two sentences. Also, I never accused you of critiizing Caplan’s other work. In any case, you have thus far been unable to show me any specific statements by Caplan saying or implying that your lives “aren’t worth living.”

    Finally, it’s a red herring to keep telling me to argue the science of Caplan’s statements, mainly because I have never disagreed with the contention that AS and autism represent a continuous spectrum of conditions without such a clear cut dividing point, nor have I disagreed that it was unwise of Dr. Caplan to use the “epidemic” and “polio” analogies. Those criticisms of Caplan were not what I was taking you to task for. I was criticizing you for hyperbolical statements such as the two above. And in any event, I am “free” to defend or criticize Caplan on any basis that I desire to use, just as you are.

  28. #28 Michelle Dawson
    March 21, 2006

    “Dr Caplan made himself popular in some quarters by allowing that some Asperger people really should be allowed to exist, because they might actually be useful.”

    This is literally Dr Caplan’s position. There is nothing in anything he has said or written which allows for a different interpretation. He starts by saying that “the case for having Bill with us becomes pretty persuasive.” And goes on from there.

    “Having decided we can’t communicate, he apparently has no ethical qualms about deciding our lives aren’t worth living, without actually checking with us.”

    This is what Dr Caplan has said/written. Dr Caplan states directly that autistics can’t “talk, communicate, be touched, or socialize” because we are autistic, and that we do not have an acceptable quality of life, also because we are autistic. That is, so long as we remain autistic, our lives are not worth living. He states that some of us can only live in institutions and all some of us can do is scream, because we are autistic. He says that autism “really is terrible” and inspires hopelessness in parents. We’re not in Bill Gates land any more.

    Thanks for the clarification re the “straw man”. Now you are saying I’m stupid or possibly merely incompetent and irresponsible. Unfortunately, I still can’t find a straw man unless autistics really are as terrible as Dr Caplan says we are, or unless he has retracted many of his statements about why we might think twice about genetic testing for autism.

    I really haven’t touched on the extent to which Dr Caplan is totally wrong (and hyperbolic) about autism and AS. I maintain that I widely and politely understated the case, considering what is known in the science, never mind basic principles of ethics. Those principles would include that you do not, as I wrote before, make major ethical judgments without impartially and accurately informing yourself about your subject.

    Too bad no one expressed any interest (just like Dr Caplan was totally uninterested) in what might really be genuine differences between autism and AS (I differentiate autism and AS in my research, and have passed peer-review re how autism is genuinely divided), which have nothing to do with “severity”; or in the unique distinction within the autistic spectrum which might have some bearing on outcomes (as I wrote, it is not the autism/AS difference).

  29. #29 Michelle Dawson
    March 21, 2006

    I am incompetent. I wrote:

    “Unfortunately, I still can’t find a straw man unless autistics really are as terrible as Dr Caplan says we are”

    Nope, that’s not a straw man. I should have said “unless Dr Caplan is really just kidding about how terrible autism and autsitic lives are”, or words to that effect.

    That will teach me to post anywhere while cranking out legal documents under deadline, in a case featuring some Dr Caplanesque false and pejorative views of autism and their consequences.

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