by Dr Stephen Basser
The concept of informed consent is an important one in medicine. Modern science based health care is a complex entity and it is the responsibility of those who dispense health care, or communicate about it, to present evidence regarding medical treatments and procedures in a balanced way. This means objectively discussing benefits and risks to assist consumers of health care to make informed decisions about their care.
Like many of my colleagues I have long been critical of groups that clearly oppose childhood immunization but attempt to hide or obscure their ideological stance by creating ambiguously named web sites and presenting what they claim is balanced information.
One of these groups – The Australian Vaccination Network (AVN) has been the subject of an inquiry by the Health Care Complaints Commission (HCCC). The inquiry resulted from two separate complaints, one by Mr Ken Mcleod, and one by Toni and David McCaffery, parents of a daughter who died from whooping cough (pertusssis)in 2009. The inquiry concluded that the AVN clearly had an anti-vaccination agenda, and that it did not provide parents with a balanced viewpoint. Rather, it was concluded that the AVN provides “information that is misleading for the average reader by inaccurately representing information, [and] selectively reporting information…”. Supporters of science based medicine both here and overseas are applauding this conclusion, as well they should.
Unfortunately there are many groups like the AVN out there. Characteristically these groups will cherry pick information to fit in with their ideology, and react with personal attacks or paranoid conspiracy theories when challenged with evidence that demonstrates their dishonesty. They tenaciously cling to beliefs long after the science has demonstrated the falsity of these. The most egregious example of this is the persistence on the part of the anti-vaccination groups in presenting a link between the Measles Mumps Rubella (MMR) vaccine and the development of autism.
Science has clearly shown that the MMR vaccine does not cause autism, but you will not find this information on any of the offending groups web sites. They continue to peddle misinformation and fear, and are unconcerned about the consequences of doing so. Dr Andrew Wakefield, the researcher who proposed the hypothesis initially, has been elevated to hero status by the more extreme anti-vaccination groups, despite his science being thoroughly discredited , his ethics severely questioned, and his original study retracted in full by the journal that published it. As they say, never let the facts get in the way!
Immunization is one of the great success stories of modern medicine, and has been responsible for the near eradication in developed countries of diseases that have historically been responsible for significant levels of morbidity and mortality. Like all medical interventions immunization is not risk free but fortunately severe reactions are comparatively rare, and there is no doubt that the benefits far outweigh the risks. There is no true debate about this within mainstream science. There are not two sides to this story, just as there are not two sides to the scientific fact of evolution. To review the immunization literature, and reach any other conclusion, requires one to be scientifically either illiterate or dishonest, or perhaps both.
In keeping with immunization’s scientific underpinning there is active ongoing research aimed at developing vaccines with even better efficacy and safety profiles, and creating vaccines for conditions that are currently not preventable in this way, such as malaria. If groups such as the AVN were driven by science rather than ideology they would be open to the possibility of such a new vaccine, and applaud its potential to save the millions of lives it could save around the world. I suspect, though, that we would all turn a nice shade of blue holding our breath waiting for this acknowledgement. Every new vaccine of the last 10-20 years has been met with opposition from groups such as the AVN, and there is no good reason to expect a different response to vaccines for malaria, or for HIV, when these eventually become available.
To truly appreciate the seedy underbelly of the anti-vaccination lobby I recommend reading more about Toni and David McCaffery, and the circumstances that led to them submitting their formal complaint about the AVN to the HCCC.
The McCaffery’s daughter, Dana, died in early 2009 from Whooping Cough aged just 4 weeks old. The McCaffery’s have stated that they did not fully appreciate how dangerous Whooping Cough can be, particularly in very young infants As a result of their tragic experience they elected to try and improve the level of public understanding of the potential seriousness of Whooping Cough, and of the importance of immunization in helping to lower the chance that other parents might suffer the same loss they had.
According to the McCaffery’s in response to these attempts at educating the public the AVN suggested their daughter did not die from Whooping Cough, and stated that Whooping Cough is not a dangerous disease. Letters and E-mails were apparently received from supporters of the AVN that questioned the McCaffery’s story, their honesty, and the cause of their daughter’s death. Yes, you read that correctly, parents who had suffered through watching their child die as a result of contracting a preventable disease were accused of lying. How ideologically driven do you need to be to behave like this? How inconvenient for the AVN that a real child died from a real disease that can be prevented by immunization. Don’t offer the parents sympathy for their loss, and accept that you might be wrong – that these diseases can be dangerous – no, let’s just shoot the messenger, and defend the belief to the very end, even if it means losing any shred of human compassion.
Informed consent requires the provision of objective, balanced, factual information. The HCCC inquiry has found what many of us have long suspected – the AVN is not in the business of helping parents make an informed consent, as it does not provide objective, balanced, factual information. Parents and their children, deserve far more than the ideology wrapped in a thin veil of pseudoscience offered by the AVN. Hopefully the HCCC ruling will open a few eyes, and maybe, just maybe, save a few lives.