California Bill AB 2109: Real informed consent versus antivaccine misinformed consent

I’ve discussed the concept of “misinformed consent” multiple times before. Quacks in general, particularly the “health freedom” movement proclaim their dedication to “informed consent.” “All we’re asking for,” they will say, “is informed consent.” The antivaccine movement in particular demands “informed consent” about vaccines. Be it Barbara Loe Fisher, the bloggers at the antivaccine crank blog Age of Autism, or any of a number of antivaccine warriors, demanding “informed consent” seems to be every bit as much of the antivaccine arsenal as the “toxins gambit” or ranting about “fetal cells” in vaccines. None of this is to try to say or even imply that informed consent isn’t incredibly important. It is critical to everything we do in medicine, both in clinical practice and research in the form of clinical trials. It is, quite correctly, considered a major failure when adequate informed consent is not given, and when the failure to provide informed consent is intentional or comes about through neglect it’s considered highly unethical. Medical ethics demands that patients be aware of what it is they are getting as well as what the potential benefits are relative to the potential risks, and that they have the freedom to choose to undergo or refuse the proposed therapy.

However, what the antivaccine movement means when its representatives demand “informed consent” resembles true informed consent only by coincidence–and, let’s be frank, not even then. In fact, as Todd points out, the actions of the antivaccine movement are profoundly inconsistent with a real desire for real informed consent. As Todd pointed out, there is a golden opportunity for the luminaries of the antivaccine movement to prove that they support informed consent. This opportunity comes in the form of a proposed law in California, AB 2109. This bill, if passed, would require parents seeking a philosophical exemption from vaccination for their child would have to obtain from their child’s doctor or health care practitioner a signed statement attesting that the the doctor provided them with information on the benefits and risks of vaccines. That’s it. To me that seems to be a pretty low bar to require for a philosophical exemption from vaccination. Right now, all the parents have to do is to sign a form at the school. Personally, I like the idea promoted by Douglas Diekema in a recent issue of the New England Journal of Medicine that obtaining a religious or philosophical exemption should not be less difficult or costly than undergoing vaccination and that it should require at least a visit to the doctor’s office. Right now, in California, getting an exemption is easier than getting one’s child vaccinated, and not just a little easier. It’s way easier. Just sign a piece of paper saying that vaccines are against your personal belief system, and–voilà!–it’s done. As Todd put it, “Parents are still free to put their children and their communities at risk of disease outbreaks based on personal opinions rather than facts. They just aren’t allowed to be quite as lazy about it any more.”

Unfortunately, the antivaccine movement has rallied not for AB 2109, but against it. Barbara Loe Fisher, all her protestations for “informed consent” notwithstanding, has issued what is in essence a call to arms to her fellow antivaccinationists to try to defeat the bill. It’s full of appeals to “personal freedom,” claims that doctors would not sign such forms, and, hilariously, this complaint:

  • Especially in California, many families utilize health care providers not reliant on pharmaceutical drugs and vaccines, and only practitioners part of the pharmaceutical paradigm or medicine are allowed to provide the information and sign the form under this bill.
  • AB 2109 discriminates against families utilizing complementary and alternative medicine by forcing them into paying money to a medical practitioner they wouldn’t otherwise use who is already philosophically opposed to the parent’s personal and religious convictions regarding vaccination.

Barbara says that as though prodding parents who take their children to quacks to take them to a real doctor for just one visit is a bad thing. Of course, it’s “health care providers not reliant on pharmaceutical drugs and vaccines, and only practitioners part of the pharmaceutical paradigm” who tend to promote antivaccine beliefs.

Of course, I expect such nonsense from someone like Fisher. I don’t expect such nonsense from a physician. In fact, call me naive, over-optimistic, or just someone who hangs with his tribe too much, but I don’t even expect nonsense like that from someone like Dr. Jay Gordon.

Or Dr. Robert Sears.

Unfortunately, I was wrong. Dr. Sears has joined Barbara Loe Fisher’s voice against AB 2109 by writing an editorial that was published first on that wretched hive of scum and antivaccine quackery, entitled California Bill AB2109 Threatens Vaccine Freedom of Choice. Not surprisingly, two days later Dr. Sears crossposted his article to that grandmother of all wretched hives of scum and quackery, The Huffington Post. His reasons for being opposed to AB 2109 are virtually indistinguishable from the reasons posted at the NVIC website, right down to Dr. Sears thinking that doctors won’t sign the form:

However, what gravely concerns me is that some doctors will refuse to sign this form. I know how doctors think. Many doctors strongly believe that vaccines should be mandatory, and that parents should not have the right to decline vaccines. Some doctors are willing to provide care to unvaccinated kids, despite this difference in philosophy. But now the power over this decision will be put directly into doctors’ hands. He or she can simply refuse to sign the form. Doctors who oppose vaccine freedom of choice have been frustrated for years over this issue. Finally, they will have the power to impose their beliefs on their patients. Patients will be forced to find another doctor to sign the form, submit to vaccines, or get kicked out of public school.

And, of course, there’s the question of liability fears, which leads Dr. Sears to state that he knows for an “absolute fact” that some doctors will not sign the form “out of principle or fears of liability.” How he knows this “for an absolute fact” he doesn’t say. The only part where Dr. Sears makes a modicum of sense is that some doctors might be reluctant to sign the form for a child based on a single visit, particularly when it’s obvious that that’s the only reason the parents brought the child in to be seen and evaluated. That might be so for some doctors, but how many doctors do sports physicals, insurance physicals, physical exams for workers’ compensation, and the like, even though they know that the patient probably won’t come back to see them again? How many physicians in California, for that matter, refuse to sign medical exemption forms for vaccination? Not very many.

If you don’t believe me that Dr. Sears is cribbing from the NVIC playbook, though, read this passage:

Natural and alternative health care providers can NOT sign the form; it must be a “regular” medical professional. Some families only see naturopathic or holistic health care practitioners instead of pediatricians. These families will have a difficult time getting the form signed.

Again, Dr. Sears, you say this as though that were a bad thing. Also note how his language is almost indistinguishable from that of the NVIC. Getting kids whose parents are using quacks for their primary care physicians brought in, even just once, to see a real doctor can only be a good thing. Here’s a hint for Dr. Sears: It’s not a good thing when passages of your blog post look as though they’ve been directly cribbed from an NVIC position statement! If you don’t want to be perceived as antivaccine, then don’t use NVIC arguments in language that could fit right in on the NVIC website without raising a single eyebrow of Fisher’s fans. Besides, there are plenty of antivaccine-sympathetic (or even antivaccine-friendly) doctors like yourself, Dr. Janet Levitan (who, it should be recalled, is perfectly happy to encourage parents to lie about their religious beliefs in order to obtain religious exemptions from vaccination for their children), or Dr. Jay Gordon out there, who will probably be more than happy to sign such forms after having provided a heapin’ helpin’ of misinformed consent to the patient.

In fact, it wouldn’t surprise me at all if one result of this law would be the creation of a cottage industry of antivaccine-sympathetic pediatricians advertising their willingness to sign philosophical exemption informed consent forms in California with only the most perfunctory of visits. It could be quite the little cash cow. Unfortunately, requiring that parents see a real pediatrician for real informed consent is no guarantee that they will actually get real informed consent based on science, but it makes it more likely. Certainly it’s far more likely that parents will get something resembling informed consent if they go to a real pediatrician than if they go to a chiropractor, naturopath, or homeopath. Moreover, chances are that insurance will pay for most, if not all, of any visit required to obtain a vaccine exemption informed consent form from a physician. It’s largely a win-win situation, although Dr. Sears doesn’t see it that way. In fact, he doesn’t even seem to agree with the purpose of the bill, namely to try to increase vaccination rates:

The sponsors of this bill may have some good intentions, as their primary “public” reason for the bill is to make sure that parents who don’t vaccinate their children are making an informed medical decision under the guidance of their doctor. But it isn’t difficult to see the REAL reason for the bill: to increase vaccination rates in our state by making it more difficult for parents to claim the exemption.

Again, Dr. Sears, you say that as though that were a bad thing. Or, to put it another way, why don’t you think it’s a good thing to try to increase vaccination rates?

Contrary to Dr. Sears’ paranoia over what he apparently perceives as the dark “real” motivations of the sponsors of AB 2109, I see little evidence that the sponsors of this bill aren’t being straight with us. Of course they’re trying to increase vaccination rates; they’re actually pretty straight about their motivations. They’re intentionally trying to make it a little more difficult to get a philosophical exemption approved. And why not? I agree with Dr. Diekema. It shouldn’t be so incredibly easy to get an exemption compared to actually getting one’s children vaccinated. The hard core antivaccinationists will take that extra step; those who are more lazy than actually committed to not vaccinating their children will probably not. In any case, the real reason that Barbara Loe Fisher, Dr. Sears, and the rest of the antivaccine movement don’t like AB 2109 is exactly because it makes it a little harder to get a philosophical exemption. More importantly, it will require some parents to take their children to a physician and have a talk about vaccines. Dr. Sears points out that by the time a parent has made up her mind to get an exemption that talking to a physician about it will probably not change her mind. That’s probably true, but the current state of affairs in California is that it’s so easy to get a philosophical exemption that it’s much easier than actually bothering to get one’s children vaccinated.

The decision not to vaccinate one’s children is every bit as much a medical decision as the decision to vaccinated, and it needs to be made with adequate informed consent. The real reason antivaccinationists are so opposed to AB 2109 is because they fear informed consent. Their version of “informed consent” is a parody of real informed consent. It is, as I have characterized it many times before, in reality misinformed consent, in which the risks of vaccination are hugely exaggerated while the benefits downplayed to the point that any rational person, if she accepted such “risk-benefit” analyses at face value would decide not to vaccinate her child. Unfortunately, the average person doesn’t have the background knowledge and understanding to see through the misinformation at the heart of misinformed consent. They have a hard time knowing that the claims of people like Barbara Loe Fisher that vaccines cause autism, neurodevelopmental disorders, autoimmune diseases, and so many other ills that they attribute to vaccines are without a basis in science, epidemiology, or clinical evidence. A pediatrician can help them do that by providing them with genuine informed, rather than misinformed, consent.

And that’s exactly what the antivaccine movement fears. So, my readers in California, please be sure to contact your legislators to voice your support for AB 2109. You can be sure the antivaccine movement is trying to pressure them not to pass this bill.