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The narrative for many skeptics and rationalists is simple. For example; in 2002 two parents in Australia chose to ignore medical recommendations, and continue to ‘treat’ their daughter’s eczema with homeopathy. Their decision resulted in her death. It is these kinds of events that scientists and skeptics point to when people ask ‘What’s the harm?’. The reality is that bad choices can have fatal consequences.
So what’s the solution to people making the ‘wrong’ choice? If you were to believe what you hear at the average ‘Skeptics in the Pub’, or in research labs all over the UK, it is that people need to understand more science. At first glance it’s a compelling argument when placed next to these tragedies. After all who wouldn’t want the best for a child if given the facts?
The recent events surrounding Ashya King’s disappearance from hospital have triggered similar responses. King, a five-year-old boy, was removed from hospital by his parents when they objected to the treatment doctors suggested for his brain tumour - conventional radiotherapy. According to the BBC, “Mr King said he and his wife were seeking a treatment for Ashya that he had not been offered. He said they wanted Ashya to have proton beam radiotherapy - a treatment that targets tumours directly - because they did not want him to be “pelted with radiation”.”
As expected, social media was full of people making statements like, “When people say ‘What’s the harm?’ this is it,” before providing a link to the story. Blame was placed on everything from the religious preferences of the parents...
“It should be a criminal offence for any adult to prevent a child from health treatment on the grounds of religious belief.”
... to their scientific literacy.
“The twitter feed reeks of medical ignorance and the implication that parents effectively own their children.”(Post on the ‘Skeptics with a K’ Facebook page)
The problem with these comments is that they’re prejudiced. It’s not surprising that the father used emotive terms like ‘pelted’ - it would have been rather strange considering the circumstances for him to use the language of a scientific journal - but it doesn’t make him ignorant. This kind of irreverent and intolerance towards those without the apparently required level scientific literacy is rarely helpful. It’s similar to Richard Dawkins’ social media use in sharing his views on religion - comments that are at best unpersuasive, at worst polarising.
It’s not just self-identified skeptics weighing in. One acquaintance involved in public engagement stated that, “I think it’s a good question whether it should be their right to go against accepted scientific consensus”; odd, considering the discussion had already established that the proton therapy was an effective treatment. Statements like this seem to completely ignore that self-determination is an integral part of human rights.
It now appears that Ashya parents’ choice of proton therapy isn’t as controversial as people thought, although the specifics won’t be known until all the details become clear. Even so, the starting point for debate should never have been about the scientific literacy of the individuals, or their religion.The real issue is that medical profession appears to have failed so completely to work with a patient’s parents, that they felt kidnap was the only solution.
That’s not to say that those trying to help don’t have a very difficult time, clearly they do. Today, every patient has access to nearly endless pools of information, via websites like Wikipedia or online forums, and self-diagnosis - often haphazard - is increasingly common. Given that, the idea that ‘more knowledge’ is the solution is obviously false. It’s also redundant once you get into topics like the cost-benefit trade-offs of experimental treatments, and who gets them. These aren’t questions of knowledge - there will always be contention; especially, as in this case, when it looks as if they’ll be available on the NHS within a few years.
The problem here is not a lack of knowledge, or scientific literacy, but a failure of public engagement. A failure that resulted in a man-hunt across Europe and two parents ending up in jail. This isn’t just a lesson for the medical profession, or the police, or for people complaining on twitter. It a reminder for everyone who works in any field that requires a relationship with the public. The idea that the public is deficient in knowledge is offensive.
The diversity of public issues around science encompasses everything from global warming to GM crop to nuclear fusion. What hope do we have of providing citizens with an all-encompassing ‘toolkit’ that let’s them understand any scientific topic thrown at them? It’s not as if being a word-leading researcher studying the genetic basis of some chronic disease will make you fully understand the implication of geoengineering. This is why today it is public engagement, rather than some vague notion of scientific literacy, that is seen as our best hope to increase the public understanding of science issues.
Guest post by Andrew Holding: @andrewholding
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