Posted by apgaylard on February 8, 2009
Back in 2005 Edzard Ernst discussed this in the context of the use of so-called complementary and alternative medicine (CAM).
“The principle of informed consent means that patients need full information about a treatment before receiving it […] Informed consent, however, is more than just agreement, it’s also about information. According to the Department of Health, the data that healthcare professionals need to provide includes “information about the benefits and risks of the proposed treatment and alternative treatments”. [emphasis mine]
Informed consent means having full information, which includes the benefits and risks of the proposed treatment; or any viable alternative.
Without full information any consent is mis-informed; the ethics of the transaction between the patient and practitioner have been compromised.
However, what about when a patient decides to withhold their consent; shouldn’t this decision be equally fully informed? I would contend that allowing a refusal to be made in ignorance of the facts is unethical.
Anti-MMR and anti-vaccine campaigners often talk about the importance of an individual’s undoubted right to decide when airing their views. And Barnett is no exception, at one point she apparantly said,
“you’ve always got to hear two sides, you’ve got to make an informed decision”.
The problem with this is that truly informed decision making is not about giving a hearing to “two sides”; it is about being in possession of the full facts. A patient needs, “information about the benefits and risks of the proposed treatment”. A patient does not need mis-information. It is possible that one side requires little or no consideration at all: it may be entirely spurious.
One of the problems with Barnett and her ilk is that they don’t actually support the public getting access to the information they really need. Instead, they promote their litany of myths and misconceptions: Wakefield “wasn’t really allowed to have his say”; MMR isn’t useful because it isn’t perfect; MMR is linked to autism; Measles isn’t a serious health problem. Anyone who disagrees with them is likely to be accused of being in the pocket of the pharmaceutical industry.
In the guise of providing people with information to help them reach a balanced decision, anti-vaccine campaigners often provide un-evidenced assertions; rely on debunked work and baseless conspiracy theories (as seen in Barnett’s reported comment, “there are all sorts of other figures that have been withheld from us, and I don’t know what they are because they’ve been withheld!” Classic).
More than that, they studiously ignore good quality evidence which contradicts their beliefs.
They are actually advocates of ignorant refusal. They end up supporting the right to choose only in the presence of ignorance: their public pronouncements promote continued ignorance.
So, what does the balance of evidence really say about the safety of MMR?
immunize.org provide a very helpful summary of the evidence. It lists, “25 studies that refute a connection between MMR vaccine and the development of autism” which are balanced against, “3 studies that suggested a connection between MMR vaccine and the development of autism”.
One of the three worrying studies is, of course, Andrew Wakefield’s infamous 1998 Lancet paper. As the summary notes, “In 2004, The Lancet published a retraction submitted by 10 of the 13 original authors. The authors stated that there was no connection between the MMR vaccine and the bowel disease/autism syndrome.”
Another is a study by Wakefield and co-workers published in 1993. Other researchers have not been able to replicate his work – a clear indication of lack of reliability.
“This exhaustive analysis of the experimental RT-qPCR data generated by the Unigenetics laboratory [the lab used for the work reported in Uhlmann et al.] demonstrates persistent and widespread contamination with F-gene DNA. As a result there is no credible evidence for the presence of either MV genomic RNA or mRNA in the GI tracts (or blood samples) of any patient investigated by this laboratory. Consequently, this finding excludes any link between MV and, by extension, the MMR vaccine and autism. [empasis mine]
Yes, all Uhlmann et al. found were contaminants from their own laboratory.
So, when it comes down to it the score is, by this count, 25-0 in favour of the safety of MMR. Just to drive the point home I would like to quote from Paul Offit’s excellent “Autism’s False Prophets”,
“The science is largely complete. Ten epidemiological studies have shown MMR vaccine doesn’t cause autism; six have shown thimerosal doesn’t cause autism; three have shown thimerosal doesn’t cause subtle neurological problems; a growing body of evidence now points to the genes that are linked to autism; and despite the removal of thimerosal from vaccines in 2001, the number of children with autism continues to rise.”
[Offit PA, 2008, Autism’s False Prophets. Columbia University Press, p.247]
On page 256 he makes a selection of eighteen “Studies exonerating MMR”. Here are the references, with links to the on-line content where available.
So what is the real balance of risks against benefit for the MMR vaccine? The medinfo website carries the following useful information.
|Risk after natural disease||Risk after first dose of MMR|
|Fits (convulsions)||1 in 200||1 in 1,000|
|Meningitis / encephalitis||1 in 200 to 1 in 5,000||1 in 1,000,000|
|Conditions affecting the clotting of the blood||1 in 3,000||1 in 24,000|
|Severe allergic response (anaphylaxis)||–||1 in 100,000|
|Deaths||1 in 8000 to 1 in 10000 (depends on age)||
It would appear that the natural diseases are around five times more likely to lead to fits; at least 200 times more likely to cause Meningitis or encephalitis; eight times more likely to cause abnormalities in the clotting of blood. Finally there is no evidence to suggest that MMR causes death, whilst the rate for the natural disease is between one in eight and ten thousand. Other sources quote death rates in the range of between 1 in 2,500 to 1 in 5,000 (depending on age). Neither is there any reason to suppose that MMR causes autism.
On the negative side, the vaccine can cause anaphylaxis in around one in a hundred thousand cases.
If people were fully informed about the risks and benefits of MMR, not just for their own children but other members of society, then their consent to vaccination would have real meaning .
Equally important: refusal would not be in ignorance of the real risks involved.
I am not so naïve as to think that everyone would chose to have their child vaccinated with MMR (note: a very few children cannot have MMR for medical reasons). Neither am I arguing for the removal of informed consent or for the use of compulsion.
What I would hope is that limiting the scope for ignorant refusal may see vaccination rates recover to a level where the damage caused by serious childhood illnesses is minimized. After all, before the MMR scare, measles was under control in the UK.
Unwittingly Barnett provides an accurate commentary as to why measles infections are running at alarming levels in the UK,
“… if you scare-monger, people don’t know how to make clear decisions about some things”.
Quite; unfortunately it’s Barnett and people with similar attitudes who continue to “scare-monger” with the connivance of the media and some medical ‘professionals’ who ought to know better.
The Jeni Barnett quotes are taken from the transcripts generously provided on the following blogs:
jdc325’s Weblog also has a useful summary of recent MMR related news.
12 Responses to “Ignorant refusal”
Sorry, the comment form is closed at this time.