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Equality and the Clinical Trial Dating Agency

The first advert for the sale of a clinical trial place offers, for $2 million, the chance to participate as a patient in a trial investigating the Farmington virus (FARV) and its potential efficacy in treating certain forms of brain tumours. Meanwhile, Alexander Masters has written convincingly about his idea for a clinical trial dating agency: matching wealthy but sick donors with scientists who have an idea for a cure but no money for a trial (shorter version also available). In Masters’ idea as in the real life case, the proposal is that the wealthy donor will pay not just for himself or herself, but enough for the trial to go ahead with a full complement of those who could not otherwise afford it, recruited on the same basis as any trial.

Predictably, ethical concerns have been raised, perhaps the main one being equality: “In the UK, the principles in participating in clinical trials include open and equal access for those who chose to participate” (Kate Law, director of clinical and population research at Cancer Research UK, quoted in The Telegraph ).

Yet there are many more clinical trial ideas with potential to become effective treatments, and many more patients desperate for a Hail Mary pass, than there are funds to cover their costs. The alternative to this method of funding is not a clinical trial funded by the government, or by pharmaceutical companies, or by charities, but no clinical trial at all. Diseases that are rare are particularly vulnerable.

Moreover, the wealthy have always been able to access newer and better forms of healthcare than others. For example, by travelling to countries where newer or better forms of healthcare are available, and paying privately for healthcare there.

Equality is an excellent guiding principle to live by: if, that is, we can provide everyone with an equally good situation. But the finite nature of resources makes this impossible – some inequality will always remain. Therefore, the only way to bring about complete equality is to “level down” by removing the advantage some will enjoy after all resources are deployed. Equally bad is much more achievable than equally good.

I believe, with Alexander Masters, that a better approach is to leverage the resources of those who have them to improve the situation of those who do not. Equality remains an important principle, but it is tempered by another important principle: maximizing the good.

As I have said in the past, I’m not a utilitarian, but there should be very strong reasons if we are to decide against the best outcome.

The NHS could radically increase its delivery of health care if it moved to a mixed private-supported public model. Imagine that we built the world’s best cancer therapy centre in Oxford, replete with state of the art (but very expensive) proton therapy. The building could be funded by rich internationals, with an interest in and priority in receiving the world’s best cancer treatment. Half the patients could be rich private individuals who would fund the treatment of the other half, NHS patients.

For the super rich, money is no object; for the NHS, it is every object.

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6 Comment on this post

  1. Hi Julian,

    Just a few tentative arguments against this idea. An initial disclaimer – I’m generally instinctively sceptical about free-market/private solutions, and that’s probably part of why this idea doesn’t sit quite right with me.

    One way that might be promising to argue against the idea of funding clinical trial places is to take a broadly Effective Altruist view – that in a world of finite resources, including money, these resources should go to wherever, and whoever, they do they most good for. This argues both from equality – that the interests of millionaires are no more valuable than those of everyone else – and maximising the overall good.

    With regards to maximising the good, though I haven’t yet had the time to delve for empirical support, it should be reasonably clear that funding research into rare diseases is unlikely to be the best way to achieve this. Firstly, these diseases, by definition, affect a relatively small fraction of the community, and even if these trials succeeded in producing a viable cure, it would only provide benefits to this minority group. There are probably many other diseases, or even general causes that would produce greater net ‘good’ from the $2 million. Secondly, it might be that part of the reason that such trials have difficulty finding funding is that they are ‘moon-shot’ efforts – trials which have a relatively low likelihood of success. Perhaps, then, such trials should not be funded in the first place while there remain other (similar?) trials with a higher likelihood of succeeding, and thus a greater expected increase in net ‘good’.

    The obvious reply to such concerns is to say that these are irrelevant concerns, and that the actual decision is whether or not we should make use of this additional source of funding, as you’ve suggested. That is that the choice is, essentially, whether or not we want one additional clinical trial, with whatever additional ‘good’ could potentially follow, or no trial at all.

    I’m not sure, though, whether this is necessarily the best way to frame the problem – nothing, particularly when it comes to social and political issues, happens in a vacuum. One problem I can imagine is that if “clinical trial dating agencies” are so successful that they become the norm, governments might be tempted to throttle back on the amount that they spend on R&D, reasoning that such agencies can make up the shortfall. This is unfortunately likely in an era of ‘healthcare rationing’, budget-balancing, fiscal belt-tightening, and privatisation. There are some things which should remain publicly-funded as common goods, both to avoid conflicts of interest, and to ensure that the overall good is maximised, and it is conceivable that health R&D is one of these. It might be better to leave allocation of scarce resources to ‘neutral’ panels of informed experts, rather than rely on the self-interest of the mega-rich coinciding with the greatest good.

    Finally, even if we proceed with this way of framing the problem, one could note that it might be that some things should not be up for sale, unless there is overwhelmingly massive benefit to be had. Democracy provides one example – we generally think that it should be one-person-one-vote, rather than one-dollar-one-vote (though campaign funding and corporate lobbying has significantly altered the landscape), even if we argue that we could balance budgets overnight by charging $10,000 per vote. Just because the wealthy already lead better, more comfortable, and more healthy lives does not generally provide us with a reason to give them greater opportunities to leverage their wealth to increase these differences, by opening up more and more avenues for ‘common goods’ to be purchased.

    1. I suppose the problem is that in an ideal world the millionaire would hear the effective altruist argument and give all his money to malaria research (or the most effective equivalent). But of course in the real world, this millionaire, and many millionaires do not do so. They do, like many non millionaires, give to causes close to their hearts. Whilst we might want to encourage them to think about the greater good, surely we should not prevent them (or others) from thinking about smaller (numerical) goods. Both are better than nothing.

      We live in a world not just of finite resources, but of resources controlled by people who are not effective altruists.

      So whilst it does make perfect sense for government funded trials to focus on common diseases to the detriment of more rare diseases, I don’t think it should actively disallow people from using their own resources to help those who do have more rare diseases- including themselves.

      Some things are for sale, some things are not for sale. I think we should decide each on their merits.

      1. What about giving millionaires the chance to give money for trials researching their own rare disease provided that they give an equal amount of money to the NHS, or to fund malaria research (or the most effective equivalent)?

        1. You could, but I don’t see that it would be necessary- unless every donation to charities for rare diseases has to be likewise matched.

  2. I find this to be a fascinating case of exploiting the rich. Consider: depending on the jurisdiction (US and UK, though evidently not Canada), there are regulations against sale/marketing of unproven medical treatments, even in a research context. This is in part so that pharma companies (or universities) don’t end up exploiting the ignorance of patients into spending (big) on unproven treatments. I have little reason to think anything different is going on here; an individual with a debilitating disease is, out of desperation, spending massive resources on an unproven treatment. The risk, then, is that companies (or even universities) can make a killing preying on wealthy donors’ desperation, therapeutic misconception and ignorance.

    But do we care? Is exploitation (i.e., taking unfair advantage) only a problem (or only possible) when the target is not wealthy (or otherwise overall advantaged)? It seems not – though the rich are overall advantaged, one can find local disadvantages (here, the wealthy donor’s disease) that are leveraged perniciously. But even if it is a pro tanto problem, perhaps it can be outweighed – many other people benefit from the research (free medical care for other participants, better research to develop a treatment/cure for all with the disease). Just as we (non-libertarians, anyway) find it acceptable to seize the wealth of the wealthy to fund research, maybe it is acceptable to exploit their vulnerabilities to fund research.

    Interestingly, while libertarians balk at the taxation strategy, I suspect – given their indifference to exploitation – they would have no problem with the Masters strategy. So this approach may have the added advantage of being palatable to both liberals (if framed in the right way: exploitation of the rich/redistribution of wealth) and libertarians alike.

  3. While I am not a strict libertarian, I do think we should respect people’s liberty. If the rich have made their money legitimately, they can spend it however they wish. If they wish to fund an experimental trial, and a researcher wishes to conduct such a trial, it is nobody else’s business to interfere in that transaction. So purely privately funded trials involving only rich people prepared to pay should be allowed, just as they are allowed to spend their money on megacruisers or helicopters. Given this, it is more ethical for half the people to be people who can’t pay. It is important to remember that purely privately funded research ought to be allowed in a capitalist society. It would also have positive externalisties, such as identifying treatments that would flow on to those who cannot afford them. If rich pharmaceutical companies can construct trials to develop drugs to make money for them, why can’t rich individuals fund trials to develop treatments for their own diseases? You may not like it, and it may not be perfect, but I can’t see a reason to prevent it.

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