In June 2010, my then twelve-year-old daughter returned from school with leaflets about the new HPV vaccination. I read these with alacrity and concern. My interest was not simply that of a concerned parent, but as an academic working in medical law and ethics, who has particularly examined issues of adolescent consent to medical procedures, and indeed, as a joint author of one of the few papers providing empirically founded critique of the notion of so-called ‘Gillick competence’.
I wrote up an initial analysis of my concerns, which included the following points. The programme of vaccination was aimed exclusively at girls, for a virus which infects both males and females; yet again, then, the message is being given to girls, just on the cusp of puberty, that they have greater responsibility for sexual health than boys. As my own daughter remarked, ‘It’s the boys who give us cancer. They should be made to have the vaccination.’
The information given to parents was overly emotional and misleading on points of law. The leaflet said that every year, fifteen girls in Oxfordshire would die of cervical cancer. Actually, as sad as any death from cervical cancer is, it’s not girls who die, it’s women; cancer is a feared disease, but childhood cancer especially so. This seemed to me an example of squeezing maximum emotion out of the statistics without much concern for accuracy. This is also relevant to the legal issues, because consent must be free and informed; reasons were given for having the vaccination which were arguably exaggerated.
On the point of law, the form required parents to sign consent for the vaccination and they were asked to give reasons for any refusal. The wording strongly implied that you had to have a reason, and that this reason had to be good enough. But this is a misrepresentation of the law here. For individuals, consent to treatment may be refused for any reason or for none. Parents may be held to account if they refuse medical treatment for their child in extreme or life-threatening situations. HPV vaccination – especially for the many 12 year old girls who are not actually sexually active – is hardly such a case. There may be good reasons on a population level to get this cohort vaccinated to achieve a good level of herd immunity; but on an individual level, it can’t possibly be said that the vaccination is so important for each and every 12 year old girl that parents are answerable to medical authorities for their decision. Especially medical authorities who did not seem promising candidates for understanding feminist scruples about the skewed and gendered messages about responsibility for sexual health.
I wrote up an analysis of the problems; then it occurred to me that an associate member of the Ethox Centre, where I worked at the time, might be interested in writing something jointly on this, given that he was a barrister specialising in medical law; perhaps he had some insights on points of law or relevant cases that might add to this analysis. Fool, fool, fool. I sent him my analysis and suggested a joint piece. He replied that he sometimes had pieces published in The Times and he’d see if they might take a joint article on the topic. I waited to hear back.
When he did get in touch again, it was not to say that The Times wanted a piece from us. It was to be forwarded a blog post he’d written on the Oxford Practical Ethics blog. I found I had undergone an identity shift – from colleague specialising in medical ethics, who’s published on adolescent consent to medical procedures, to that archetype, the ‘worried mum’ who had gone to a big-shot colleague for advice:
“Is the UK’s HPV vaccination programme unethical and/or unlawful?
Published September 12, 2010 | By Charles Foster
A colleague recently emailed me. Her daughter, just turned 12, had come back from school bearing an information leaflet about HPV vaccination with the Glaxo Cervarix vaccine, and a consent form for the parent to sign.
The consent form nodded inelegantly to Gillick, asserting that ‘[t]he decision to consent or refuse is legally [the girl’s], as long as she understands the issues in giving consent.’ There was no indication given, in the consent form or the accompanying literature, as to whether and if so how that understanding would be tested. The reality is that it won’t be tested at all.
If parental consent is refused, the parent is instructed to identify the ‘Reason consent refused’, and is told to turn over the page ‘for additional space to give us your reason for your decision.’
The request for a reason for refusal is perhaps a well-meaning attempt to ensure that medically misguided reasons for refusal can be addressed. If, for instance, a parent refuses because she thinks that there is a significant chance of anaphylactic shock, further discussion about the magnitude of that risk relative to the chance of HPV-related disease is warranted. Fair enough. But the request won’t be read that way by parents. They will think that there is a legal obligation to provide a reason, and since the explanatory leaflet suggests strongly that there is every reason to have the vaccine, and none not to, the effect will be to force reluctant parents to sign up because they can’t articulate a reason for not signing.
The case for some sort of HPV vaccination is overwhelming. But the strength of that case should not allow the normal safeguards for ensuring appropriate consent to be ignored.
The NHS has decided that it will pay only for Cervarix. But Cervarix is not the only vaccine. Many other countries have opted instead forGardasil, produced by Sanofi-Pasteur and Merck. This is not the place to argue the relative merits of Cervarix and Gardasil. It is enough to say that there is a good case for saying that Gardasil is a better vaccine that Cervarix. (See, for instance, here and here). The UK seems to have opted for Cervarix because it is cheap. Shouldn’t any proper process of pre-vaccination counselling for Cervarix include a mention of its main competitor? Parents or girls themselves, having the full facts, might opt to pay themselves for Gardasil. There is no mention in the explanatory leaflet of any alternative to Cervarix. The clear impression is that if you want to avoid cervical cancer you will have Cervarix.
Is there any justification for failure to tell girls and their parents about alternatives? Can it be argued, for instance, that full information might cause confusion, and that confusion might result in some girls failing to consent to any vaccination at all? Surely that’s a hard argument to run? Or might it be said that to give information about Gardasil could create a two-tier population, since all the rich girls will get Gardasil, while all the poor girls get Cervarix? That might be true, but is it a sufficient reason for the NHS to ignore the basic principles of the law of consent? Is it a sufficient reason to deny the rich girls the better protection that Gardasil might give? Let’s suppose for the sake of argument that Gardasil is indeed better. Is the egalitarian reasoning justifying the withholding of relevant information so important that it is worth letting some people get avoidable disease?
Modern European legal debates about consent tend to be framed in the language of Article 8 of the European Convention on Human Rights. Article 8(1) is undoubtedly engaged in the process of consenting girls for HPV vaccination. The Article 8(1) right, though, is not absolute. Article 8(2) provides that ‘There shall be no interference by a public authority with the exercise of [the Article 8(1) right] except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.’
It is hard to see how any conceivable justification for failing to give information could be squeezed within the ambit of Article 8(2). An imaginative barrister might say that the egalitarian justification was really the ‘protection of morals’, but he would expect a hard time from mostjudges. Might ‘the prevention of disorder’ help? Hardly: there’s no real danger that the rich, Gardasil vaccinated girls are going to be beaten up outside the school gates by their envious Cervarix-vaccinated peers. The only ‘rights and freedoms’ compromised are the right to be properly informed and the freedom to act on the information received. In the absence of evidence that proper pre-vaccination counselling would reduce the take-up of vaccination, it is arguable that the present regime is unlawful.”
True, Charles Foster had produced some new analysis, based upon the comparison of the two alternative vaccines. True, he had not included all of my analysis – he left out the feminist bit about gendered messages of responsibility for sexual health, funnily enough. But far from explaining how his thoughts on this were sparked by me alerting him to the issue – far from explaining that I had provided him with an analysis of many of the problems in the information leaflets and forms to be signed - far from mentioning that I was a colleague who had, unlike him, actually specialised in the particular area of adolescent consent to medical procedures – he didn’t even mention my name. I asked him why not. Confidentiality, he said. As if it was confidential that my daughter had had such a leaflet – it was a frigging public health campaign – EVERY girl got one.
Of course being trumped to publication on this meant that were I then to publish something, it would look as if I was simply following in his footsteps. My one regret is that I was so overwhelmingly upset, and so angry with myself for my optimistic naivety that I would be treated with respect, that at the time I just had to let this drop.
But there is a virus that spreads throughout the population. Some people appear to be carriers, immune from the symptoms but able to transmit the virus on to others. It can be hard to identify this virus; like many others before me, I have observed that amongst academics, this virus seems to switch on a silencer gene, but usually only in those with two X chromosomes; in others, it causes perceptual problems, making those who carry two X chromosomes appear to be tiny, insignificant little objects instead of people in their own right with their own thoughts and opinions. And it spreads itself from males to females, where it can cause serious problems; it can result in females disappearing – retiring entirely from intellectual debate, or speaking but remaining unheard.
It’s a virus of patronising, bullying, patriarchal, self-assured, entitled intellectual dominance.