October 20th, 2013

When cancer charities cause cancer, who is responsible?

This twitter exchange about a week ago raised the interesting question of accountability for the campaigning and policy positions adopted by ‘health lobbyists’ – usually from registered charities. Are they liable in law or otherwise accountable if they press policies they know or should know do not work or actively cause harm?  In this case, I refer to the health charities’ support for a ban on snus, in the face of all the evidence. The role of Cancer Research UK’s support for the ban on snus is especially troubling as it funds or otherwise influences so many other groups and academics.   This gets to the heart of their charitable status, which under the Charities Act 2011 requires a them to have a charitable purpose that meets a test for a ‘public benefit requirement‘  (it is worth reading this – it applies equally to the stance they take on e-cigarettes).  It turns out they are required to take account of evidence and can’t just make up positions that their staff feel comfortable with:

  • a purpose must be beneficial – this must be in a way that is identifiable and capable of being proved by evidence where necessary and which is not based on personal views
  • any detriment or harm that results from the purpose (to people, property or the environment) must not outweigh the benefit – this is also based on evidence and not on personal views

Who is responsible?  As the Charity Commission guidance suggests, it is a CR-UK’s trustees who ultimately bear responsibility.  However, it is good and fair practice to approach the management board of any charity to try to get a resolution before going to trustees and ultimately to the Charity Commission.  So the tweet reminded me of an attempt I made last year to question CR-UK’s approach.  Rather than try to engage with CR-UK’s ‘policy’ people (who I think are the source of the problem), I thought I would raise it with the CR-UK Executive Board member responsible for science, the Chief Scientist, Professor Nic Jones.  But he didn’t seem that willing to scrutinise the organisation’s position, preferring to rely on what looks like briefing from the  very policy colleagues he ought to be challenging: here is the exchange from last year.

What next? This also coincided with a letter to the Secretary of State for Health on snus (Why is the EU banning Europe’s most successful anti-smoking strategy?) from a number of experts in the field of nicotine science, epidemiology and public health, calling for the end of the 25-year error that has led to the snus ban.  If Professor Jones wouldn’t listen to me, I wondered whether he would take these others more seriously.  So the next stage was to write to him again.  He hasn’t yet replied and he may never – I don’t want to rush him. So, I’ll now leave it a while, see what happens and then decide what to do next.

To: Professor Nic Jones
Chief Scientist
Cancer Research UK

13 October 2013

Dear Professor Jones

Re: Cancer Research UK support for banning oral tobacco (snus)

You may recall our exchange last year on Cancer Research UK’s position on banning smokeless ‘oral tobacco’ (also known as snus). For ease of reference, I attach the consolidated exchange. I must declare I was surprised that the serious issues raised – a cancer charity supporting policies that are likely to increase cancer – did not prompt a more searching look at this issue.

I thought, therefore, you may be interested in seeing this letter from experts in the field nicotine, psychology and public health to Secretary of State Jeremy Hunt explaining why the policy of banning snus is unscientific, unethical and lethal. It also has serious implications for the way we address the potential of other low risk alternatives to smoking, such as e-cigarettes. If major charities raise theoretical concerns to justify restrictions and than refuse to lift support for those restrictions when the evidence shows no basis for concern and strong evidence of significant benefits, then we risk bearing unintended consequences of inappropriate restrictions on low risk alternatives to cigarettes (ie more people smoking).

I was prompted to write to you again today when a member of the public asked how Cancer Research UK is held to account when it takes positions that more likely than not are causing harm. They were making the point that the organisation was now past ‘the date of guilty knowledge’ for harm caused by the ban on snus. This is a legal concept that identifies the point when a reasonable person or organisation should know and take responsibility for any harm caused by their actions. This may not be a matter for the courts in practice, but I think it is relevant more generally to accountability and responsibility of charities and their boards and trustees. CR-UK through its own campaigning and its funding and influence of a number of groups and alliances has been instrumental in campaigning for the ban on snus to be retained in the European Union, and it now looks likely this will succeed. Though this is a ‘win’ for CR-UK’s campaigning, it is an unambiguous loss for public health and more harm will be the result.

May I suggest that you test the CR-UK positions on these issues a little more rigorously, and perhaps set up an ad hoc independent review to advise you? That sort of due diligence would be a reasonable expectation for a member of the Executive Board.

If you would like contact details for any of the signatories to the attached letter to Jeremy Hunt I can provide them. If you have any questions or would like to invite further opinions, I am sure at least one of us would be able to assist.

Yours sincerely

Clive Bates

Disclosure: no competing interest

Why is the snus issue important?  A couple of well-intentioned people have suggested we drop the snus issue and move on. Snus, they say, will stay banned and actually it isn’t likely to take off in the UK any time soon. I beg to differ for the following reasons…

1. Good policy making. Snus provides proof of concept for harm reduction and how this is handled may have important lessons for e-cigarettes. It is important that the harm reduction concept is recognised not rejected by charities, governments and WHO as potentially millions of lives are at stake.  We should want governments to make good policy, and to be prepared to campaign for it.

2. Accountability of charities and campaigners. Health campaigners used many of the same arguments to get snus banned that they now use to justify restrictions on e-cigarettes (gateways, duel use, reduced quitting etc). However, when evidence clearly showed these were not problems and beyond doubt that snus was beneficial, the campaigners did not change their position.  This contributes evidence to support the theory that objectives other than health are driving these campaigners.  Note that they did not have to actively campaign for it – they could have said nothing or acknowledged a

3.  Harm reduction potential. It is argued that it may never be a big thing in the UK but…

  • No-one can be sure of how the product might evolve over time or how tastes might develop;
  • Even if only a few hundred people wished to use it in Britain instead of smoking, it’s impact would be beneficial.  Why deny a Swedish ex-pat in London this choice.
  • This issue is addressed at European Union level (through a ban) and we should consider the implications at a European level – including in Finland or Denmark, as well as Sweden.
  • It doesn’t cost anything to lift a ban, so even a small effect will be cost-effective

4. Ethics. The ban raises serious ethical questions about the state denying a person access to a much safer product than the market leader. It is important that the issues of principle are scrutinised and the underlying philosophy challenged – not least as it bears on other aspects of tobacco and public health policy.

5. Legal challenge.  It is likely that any lifting of the snus ban would arise from legal challenge to the internal market regulation that justifies the ban.  If that happens, I would like people to know that it is good for public health and not just tobacco interests overturning sound health policy. When and if a challenge arises, the level of awareness and context in which it happens will be important.

28 comments to When cancer charities cause cancer, who is responsible?

  • Who is responsible? The charities? The FDA? Governments? No. The WHO is responsible. All the others are just parrots reciting the terrible dogmas of the WHO. The charta of the WHO and the FCTC demands new tobacco products to be banned. FCTC is law, WHO is law. We fight against the law. We are outlaws.
    WHO-law produces dead citizens.

  • Fleabag

    I work for a mental health charity that has banned e-cigs in all sites, outside company property and staff cars while on company business. This ban applies to staff and service users. When smoking rates amongst people with schizophrenia are around 75%, it highlights how risky their e-cig policy is to the physical wellbeing of the people they are there to support. Could a charity be held to account for refusing service users the opportunity to avoid smoking?

    • Dodderer

      To ban anything there should be clear evidence of harm.If there is also clear evidence of benefit,a judgment needs to be made – a weighing of the evidence.

      I don’t think that it is unreasonable to ask what evidence was considered and what weight was given to that evidence by those who made the decision.

    • Jonathan Bagley

      An astonishing decision. I took part in a medical investigation in which I underwent a high resolution brain scan. I was a member of the control group, who all had to be smokers, as the group under investigation (nothing to do with smoking) were schizophrenics. I asked the investigator about this. He said that schizophrenics are very likely to smoke and also, that they smoke because it alleviates the unpleasant side effects of their medication.

  • Snus did, indeed, set the benchmark for Tobacco Harm Reduction. When the FDA was considering changing the warning labels on Nicotine Replacement Therapy (NRT) products to remove warnings against prolonged use, against smoking while using the NRT, and against using more than one type of NRT at the same time, the Agency held a 2-day public workshop. One main question to be answered was whether nicotine absent from smoke would be likely to cause disease and death. A lot of “con” evidence was presented, but most were research at the cellular level or animal level. The epidemiological evidence that smokeless tobacco does not cause or promote cancer and, if there is any risk of cardiovascular disease, it is minimal, was, to me, the most convincing evidence of lack of danger in loosening the restrictions on NRT use. See: http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm345087.htm

  • Jonathan Bagley

    I would be surprised if CRUK wasn’t getting slightly worried about the openly hostile comments it now receives. Although currently restricted to newspaper and blog comment sections, being accused, without fear of litigation, of causing cancer rather than curing it isn’t ideal for one of the UK’s largest and most admired charities.

    • Andy Morrison

      Jonathan – vapers are fighting for their lives. They are also increasing in numbers.

      I think that as this battle becomes more intense and we see the tactics that the ANTZ are prepared to deploy against us, then we too have to up the ante so to speak. It’s one thing for us to throw our hands into the air at each and every falsehood and accusation thrown in our direction, but there comes a time when you see that you CAN and MUST fight fire with fire.

      I now feel confident enough to go on the offensive, with no fear of any repercussions. It is now crystal clear that CR UK will cause death by cancer if they continue to pursue their current stance. It is therefore NECESSARY to accuse them of that because you cant get into trouble for speaking the truth. They cannot possibly go on any offensive against anyone who points out the error of their ways – there is not a court in the land that would find the likes of myself guilty of any crime.

      It’s time to get tough with these people. Tell it how it really is, and have no fear of what you say to them whether in public or in private. I’m now more than willing to run the tiny risk of being prosecuted for telling the truth and/or exposing these people for what they are. My life is worth fighting for and I will no longer sit idly by.

      • Jonathan Bagley

        I agree entirely Andy. I always use my real name when pointing out to CRUK that their policy will lead to more lung cancer. It’s true and in the public interest and they are unlikely to want to draw attention to the issue.

  • Jean

    1) Snus might take off.
    – In Sweden, it had become marginal up to the 70’s and was rediscovered then
    – While being rediscovered, snus was transformed in two ways: they added the small tea-bags and they removed most TSNA’s. In other words, the supply adapted to the new demand.
    – Maybe people in the UK and elsewhere are not fond of the current snus aromas and would like something a bit different. If snus becomes legal, producers will try to adapt to the new markets and will come up with new brands. They may fail or succeed. Of course snus isn’t used very much ni places where it is banned, it needs an open market to prosper.

    2) Snus is ideal for relapsing, absolutely. Smokers who want to quit usually want to get tobacco out of their lives, thinking it is just an addiction with no benefits. Some of them then realise that tobacco has actually some benefits for them (which is not the case for everyone) and relapse after a while. Snus is one possible solution, e-cig is another, but while e-cig only contains nicotine, snus has all the other components of tobacco, which as far as we know may be important for some people.

    3) Legal action
    – If cigarette producers were found liable for misleading the public about the danger of their product, why wouldn’t charities and decision-makers not be liable for misleading the public about the ban they promoted? Especially when some of the evidence has been tampered with in order to keep the ban going.
    – More generally, there is a freedom issue. Coercive measures in public health are supposed to be justified by a clear benefit in terms of public health. Now, it seems that public health decision makers can take absolutely any coercive measure they want, but there must exist some constitutional limit. At least I suppose so.

    • Dodderer

      “Especially when some of the evidence has been tampered with in order to keep the ban going.”

      When the opposition has to resort to correcting fluid you know you’ve won the argument!

  • Chronos

    The elephant in the room that is being consistently ignored by the tobacco control people is that every ex-smoker is a potential backslider. I know – I’ve been there more than once. Yes, one can quit but, all too often, the success is short-lived. In my case, all it took after two years of abstinence was a whiff of cigarette smoke and I was back to my old habits with abandon. Every one of these episodes is a shock to the system and a potential precursor to chronic disease.

    This is why medicinal regulation cannot work. This is why NRT does not work. To conquer the killer one must replace the habit completely with something of equal or greater pleasure. Snus and e-cigarettes do this, removing the reward for backsliding. Removing those alternatives endangers a whole new generation of ex-smokers. Of course, some people have no shame and will continue to protect their positions no matter who or how many it harms.

    • Dodderer

      I agree completely – the figures show that up to one third of those abstinent for a year will subsequently relapse.It also raises the question,with increasing numbers of quit attempts,how many of the surveys which identify smokers and ex-smokers understate the true prevalence.

      I have had one or two cigarettes over the last 4 years but not from ‘need’.I have no fear of relapse because I prefer vaping to smoking.Unless you’ve smoked, you will never understand smoking and smokers.That’s why tobacco control are getting increasingly frustrated and brutal in their tactics.

  • Chris Oakley

    I too am concerned about CRUK Clive and I recently wrote a piece about it from a different perspective over at Liberal Vision. I think the point at which we meet is the concern that a supposedly scientific organization that is genuinely important to the UK’s research effort appears to be placing ideology ahead of good practice and rationality. As you point out, in some instances this dogmatic adherence to Healthist ideology is causing CRUK to act contrary to its fundamental purpose.

    I believe that the position that you have taken on this matter in principled, ethical, correct and backed by the evidence. I am not however optimistic that Mr Hunt, the Westminster clique or their highly placed friends in NGOs actually place any value on those excellent qualities. If they did, it is unlikely that CRUK and certain other charities would be behaving in the way that they are.

  • Jon Holland

    I’m with you Clive on the Snus issue, I smoked for 40 years & the only thing that worked for me was Ecigs. Now its been over a year since I last touched tobacco but if Snus were available say 10 years ago would it now be 10 years since I stopped smoking? I never had that chance so will never know.

    How does the position of the BMA sit with all this, I can no longer ‘vape’ at work (have to go outside with the smokers) as they have been advising companies that its not safe around other people despite the scientific evidence, the old second hand vapour argument. Company policy now is that I can vape outside but do so at my own risk.

    • Clive Bates

      Jon – I’ll be turning to the harm-causing phoney experts at the nation’s favourite trade union and bastion of provider interest shortly – hopefully later this week… They are a menace. Clive

    • Jonathan Bagley

      Jon, that’s now the University of Manchester policy. I emailed the secretary of the H&S Committee, asking him how this decision was taken and he said they had taken the advice of the BMA; deciding against adopting Salford University’s more scientific policy of permitting use except in public areas and open plan offices. Importantly the U of M policy includes student accommodation, whereas Salford’s, by implication, does not ban ecig use in student bedrooms. It is disappointing that a large university with medical, chemistry and biological science schools relies on the opinion of a doctors’ trade union and sends a poor message to the general public.

      • john

        Jonathan re the use of a e-cig in a university bedroom or other private rooms… how could they tell?

      • Jonathan Bagley

        John, they can’t, just like they can’t tell if staff use ecigs in their offices. However, a student could risk being evicted if one of his flatmates snitched on him.

      • john

        Jon
        I think you have the point, ecigs do not set off smoke detectors, are small- easily posted and there is no ‘need’ for them to look like a cigarette at all including, there is no need for a diode ‘light’.
        Its funny how these health authority people (who provably support harm minimisation in many other drug and other related areas) suddenly go all ‘prohibition era’ about a substance that, with out smoke, is no big deal at all

  • “This twitter exchange about a week ago raised the interesting question of accountability for the campaigning and policy positions adopted by ‘health lobbyists’”

    Err, I kinda ‘raised’ the question myself too back in January. ;)

    • Clive Bates

      DP – you did indeed in a very nice piece, and I meant to mention that… sorry.

      I doubt it will be possible a lay a legal case on them – the chain of cause and effect is so hard to isolate signal of impact of advocacy from the noise and other influences shaping the policy – in the end ministers decide. A court would need to be satisfied that in the absence of CR-UK’s influence there would be a greater than 50% chance that the ban would be lifted. However, that doesn’t absolve them of the obligation to act responsibly and to create public benefits related to cancer – their responsibility under charity law.

  • Dodderer

    At the risk of taking this blog off-topic,the same principle applies to the NHS and local authority sites which ban the use of ecigs.Again,there is only evidence of lack of harm – the tobacco control lobby has been allowed to do whatever it wants for too long.All their baseless dogma should be challenged where it may contravene the law.

    • Clive Bates

      The interesting thing with charities is that they have a special status. In return for lenient tax treatment and a few other privileges, they have to show public benefit. Everyone involved has different forms of accountability. Were one to commence a campaign on this issue, it would be a matter of finding who or what holds each of the various perps to account or at least constrains them (eg. rules on proportionality and non-discrimination, professional standards bodies, judicial review Ombudsmen etc) and then being rather relentless about it. But the starting place has to be simply asking. Those charged with administering ‘harder’ forms of accountability tend to take a dim view if you go straight to war without trying diplomacy, first. So that’s why I’m asking Professor Jones nicely to look into it.

      • Dodderer

        True – they don’t realise that they no longer hold the moral high ground.They are now accountable and the divine right of Jean King is gone.

  • Roger Hall

    I concur with your thoughts Clive, that Snus is highly important as it sets the benchmark for tobacco harm reduction and can be now proven beyond any reasonable doubt that smoking prevalence can be reduced by providing consumers with a choice of a safer and effective alternative to tobacco cigarettes. I’ll be extremely disappointed if the Snus ban is continued within the TPD and a legal challenge isn’t implemented, as health and facts should take an overriding priority to any tobacco control ideology or big business vested interests.

    It is clear that e-cigarettes are facing the same dubious challenges and false arguments that snus has encountered and standing up for Snus simply makes the case for e-cigarettes stronger.

  • Andy Morrison

    CR UK have scored a massive own-goal here. With the increasing number of E-cig users in the UK (and indeed worldwide), I, and the vast majority of other vapers and potential snus users , have come to the conclusion that there is no point in continuing to support their cause. This will ultimately result in a big hit in their funding. Whilst this will probably be dwarfed by the amount they get from Big Pharma, they really ought to be questioning the motives of their remaining supporters from now on in.

    Furthermore, increasing number of vapers and their families, in sheer desperation of the situation they currently find themselves in, namely that even people like CR UK who OUGHT to be on their side, are ignorantly trying to ban the very items which have the potential to save their lives, must now be thinking of the uncertain future and who to SUE once they are needlessly FORCED back to lethal tobacco.

    Having switched to vaping from tobacco (would like to have tried snus, but that is already denied me), I, amongst many others, are now taking careful note of those who seem hell bent on forcing us back to tobacco and ultimate premature death, no doubt from cancer.

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