IVF and the evaluation of policies that don’t affect particular persons

Over at the CLAHRC West Midlands blog, Richard Lilford (my boss, I should hasten to add!) writes about the difficulties with the economic evaluation of IVF. The post notes that there are a number of issues that “are not generally considered in the standard canon for health economic assessment” including the problems with measuring benefits, choosing an appropriate discount rate, indirect beneficiaries, and valuing the life of the as yet unborn child. Au contraire! These issues are the very bread and butter of health economics and economic evaluation research. But I would concede that their impact on estimates of cost-effectiveness are not nearly well enough integrated into standard assessments.

We’ve covered the issue of choosing a social discount rate on this blog before with regards to treatments with inter-generational effects. I want instead to consider the last point about how we should, in the most normative of senses, consider the life of the child born as a result of IVF.

It puts me in mind of the work of the late, great Derek Parfit. He could be said to have single-handedly developed the field of ethics about future people. He identified a number of ethical problems that still often don’t have satisfactory answers. Decisions like funding IVF have an impact on the very existence of persons. But these decisions do not affect the well-being or rights of any particular persons, rather, as Parfit terms them, general persons. Few would deny that we have moral obligations not to cause material harm to future generations. Most would reject the narrow view that the only relevant outcomes are those that affect actual, particular persons, the narrow person-centred view. For example, in considering the problem of global warming, we do not reject its consequences on future generations as being irrelevant. But there remains the question about how we morally treat these general, future persons. Parfit calls this the non-identity problem and it applies neatly to the issue of IVF.

To illustrate the problem of IVF consider the choice:

If we choose A Adam and Barbara will not have children Charles will not exist
If we choose B Adam and Barbara will have a child Charles will live to 70

If we ignore evidence that suggests quality of life actually declines after one has children, we will assume that Adam and Barbara having children will in fact raise their quality of life since they are fulfilling their preferences. It would then seem to be clear that the fact of Charles existing and living a healthy life would be better than him not existing at all and the net benefit of Choice B is greater. But then consider the next choice:

If we choose A Adam and Barbara will not have children Charles will not exist Dianne will not exist
If we choose B Adam and Barbara will have a child Charles will live to 70 Dianne will not exist
If we choose C Adam and Barbara will have children Charles will live to 40 Dianne will live to 40

Now, Choice C would still seem to be preferable to Choice B if all life years have the same quality of life. But we could continue adding children with shorter and shorter life expectancies until we have a large population that lives a very short life, which is certainly not a morally superior position. This is a version of Parfit’s repugnant conclusion, in which general utilitarian principles leads us to prefer a situation with a very large, very low quality of life population to a smaller, better off one. No satisfying solution has yet been proposed. For IVF this might imply increasing the probability of multiple births!

We can also consider the “opposite” of IVF, contraception. In providing contraception we are superficially choosing Choice A above, which by the same utilitarian reasoning would be a worse situation than one in which those children are born. However, contraception is often used to be able to delay fertility decisions, so the choice actually becomes between a child being born earlier and living a worse life than a child being born later in better circumstances. So for a couple, things would go worse for the general person who is their first child, if things are worse for the particular person who is actually their first child. So it clearly matters how we frame the question as well.

We have a choice about how to weigh up the different situations if we reject the ‘narrow person-centred view’. On a no difference view, the effects on general and particular persons are weighted the same. On a two-tier view, the effects on general persons only matter a fraction of those on particular persons. For IVF this relates to how we weight Charles’s (and Diane’s) life in an evaluation. But current practice is ambiguous about how we weigh up these lives, and if we have a ‘two-tier view’, how we weight the lives of general persons.

From an economic perspective, we often consider that the values we place on benefits resulting from decisions as being determined by societal preferences. Generally, we ignore the fact that for many treatments the actual beneficiaries do not yet exist, which would suggest a ‘no difference view’. For example, when assessing the benefits of providing a treatment for childhood leukaemia, we don’t value the benefits to those particular children who have the disease differently to those general persons who may have the disease in the future. Perhaps we do not consider this since the provision of the treatment does not cause a difference in who will exist in the future. But equally when assessing the effects of interventions that may cause, in a counterfactual sense, changes in fertility decisions and the existence of persons, like social welfare payments or a lifesaving treatment for a woman of childbearing age, we do not think about the effects on the general persons that may be a child of that person or household. This would then suggest a ‘narrow person-centred view’.

There is clearly some inconsistency in how we treat general persons. For IVF evaluations, in particular, many avoid this question altogether and just estimate the cost per successful pregnancy, leaving the weighing up of benefits to later decision makers. While the arguments clearly don’t point to a particular conclusion, my tentative conclusion would be a ‘no difference view’. At any rate, it is an open question. In my rare lectures, I often remark that we spend a lot more time on empirical questions than questions of normative economics. This example shows how this can result in inconsistencies in how we choose to analyse and report our findings.

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To whom the benefits?

An argument that often comes up when it comes to the distribution of scarce health resources is who should receive them. Many different arguments are posed with varying degrees of sophistication. Various studies have elicited population preferences for distributing scarce health resources. Eliciting societal preferences for the distribution of resources is important but does not necessarily reveal the maxim by which decisions are made. People may favour the young over the old but is this because of a maxim to do with preferring those who have not had a ‘fair innings’ or because the returns to healthcare spending may be greater in the young due to the higher remaining life expectancy and increased economic output? It is important then to also bear in mind the arguments on which distributional decisions are founded. Perhaps, with a greater awareness of the objections and benefits of certain decision criteria, people may re-evaluate their choices.

In many countries, the allocation of health care is often more equal than other goods – it is ‘special’. Its ‘specialness’ can be seen since we would consider its distribution in isolation of other social goods to be morally significant. We would find it morally repugnant if access to health care was determined on the basis of income or assets while some inequality in income is not necessarily objectionable. Health care should therefore be treated differently from mere commodities, such as clothing or cars. Clearly then, equality is an important concern, but equality of what exactly?

Equality of opportunity

Norman Daniels argues that of central importance to health care is the maintenance of equality of opportunity.  Daniels asserts that health care protects the range of opportunities available to an individual – the way they can participate in social, political and economic life. He identifies this as a distinctly Rawlsian theory of justice as fairness. Importantly, he notes that this equality of opportunity is not based on happiness, welfare or utility. He considers this a strength and points out that disabled individuals often rank their welfare higher than do people imagining life with such a disability, or indeed someone with an acute illness. But, the disability may cause a loss to capabilities and opportunities that should be addressed regardless of welfare. This, he discusses, is a weakness of cost-utility analysis.

The equality of opportunity thesis may be subject to some objections. In contemporary society, gender and ethnicity still play a role in determining one’s opportunities. This then may provide an argument for providing gender reassignment surgery or skin colour alteration to those for whom there would be no medical benefit. Basing equality on welfare or utility may not be subject to the same objections since the effect of such a surgery both physically and in altering physical features important to personal identity may be significantly negative in terms of well-being.

Luck egalitarianism

One of the greatest debates in current political and economic discourse surrounding the distribution of health care resources is the importance of personal responsibility. A popular standpoint is one of luck egalitarianism (I have discussed this before). Health care should iron out the inequalities over which the individual has no personal control and beyond that the individual should be responsible for maintaining their own health. To see it from a different angle – if we had two individuals with the same health state the distribution of health care between them should be weighted by prudence. For example, if the driver and passenger of a car were admitted to hospital after a crash which may be considered the driver’s fault, even if it were just a momentary lapse in concentration, the passenger would have a greater claim to health care. However, in this situation, luck egalitarianism does admittedly seem too harsh. Supporters of this school of thought often argue that smokers, the obese, drug addicts and so forth have less of a right to health care, since they were aware of the risks of their actions but undertook them anyway.

I personally believe luck egalitarianism to not be an adequate account of justice. One’s physical reaction to heavy drinking or smoking is to a great extent determined by factors out of ones control, such as genes and socioeconomic factors. Pregnancy might be argued to have been a choice and so should not be supported under luck egalitarianism. Similarly, luck egalitarianism has difficulty distinguishing between reconstructive surgery and cosmetic surgery. An individual’s welfare may be affected by their appearance to some extent, something which they may have no control over, thus, providing cosmetic surgery would be supported.

The priority view

These previous accounts have all been of egalitarianism. However, egalitarianism faces an important objection, raised by Derek Parfit and others. The goal of egalitarianism in health care is to ensure an equality of opportunity or of utility, for example. However, this could easily be achieved by reducing the opportunities or utility of those at the top of the scale. This would certainly be rejected as a course of action. Parfit calls this the ‘leveling down’ objection. He revises egalitarianism and instead proposes prioritarianism or the ‘priority view’. Resources should be distributed in society weighted by where you are in the distribution – those at the bottom of the scale should receive greater benefits. This would reduce inequality while not being subject to the leveling down objection. In this situation, we could imagine a luck prioritarian position or modifying any of the other previously mentioned ideas.

England’s current system of allocation, as maintained by NICE, could be characterised as egalitarian. However, I might argue that it is only weakly egalitarian. It is not aiming to ensure everyone has the same level of utility; rather that everyone has the same opportunity to improve utility. In general, it does not take into account prudence or age or any other personal characteristics. This would have the effect of moving everyone’s health upward and would be egalitarian in the sense of reducing the gap between bottom and top, but this is only because there is a limit to the improvements healthcare can make (QALYs do not go higher than one). If there were no limit to health improvements our current system would not affect the distribution of health but shift everyone equally up the scale. I also believe that opportunity is also a concern as well as utility and since opportunity is correlated with health and quality of life, reducing inequality of one should reduce the inequality in the other. I think, then, that a prioritarian position is perhaps the most tenable – we should favour health care interventions that benefit the least healthy. What weights might be attached to the worst off is open to debate and the philosophical dilemmas to do with aggregating welfare still stand, but in any case, I think the priority view is better than our current system.

From health care to health

As a final note, I will say that I have only discussed the distribution of health care. More and more evidence is showing that as a determinant of overall health, health care is only a small contributor. Health care is ‘the ambulance waiting at the bottom of the cliff’. To extend the above theories to health rather than health care is problematic. We cannot redistribute health directly, so must redistribute the social determinants of health such as housing, income, autonomy in the workplace, etc. In this case, favouring a health distribution on the basis of ability to pay (favouring the poor) would not be morally repugnant. Does this mean the health is not a ‘special’ good, whereas health care is? It at least means that health should be treated differently to health care. In any case, evaluating these ethical and philosophical arguments can only strengthen the way we make these decisions. Perhaps ethics should be more widely taught to policy makers, economists, and others.

Read more

Arneson, R.J., 2000. Luck Egalitarianism and Prioritarianism. Ethics, 110(2), pp.339–349.

Daniels, N., 2001. Justice, health, and healthcare. The American journal of bioethics : AJOB, 1(2), pp.2–16.

Segall, S., 2010. Is Health (Really) Special? Health Policy between Rawlsian and Luck Egalitarian Justice. Journal of Applied Philosophy, 27(4), pp.344–358.