Genomic medicine will affect clinical practice and profoundly shape public health.1^–5 Genomics may also significantly affect our views of what constitutes a just healthcare system, by providing us with a better understanding of the complex interactions between genes, the environment and human behaviour.4 6^–10 This paper explores the implications of genomics for healthcare from the perspective of equal opportunity ethics, and it argues that advances in genomics may make it easier to introduce considerations of responsibility for choices in a fair scheme of healthcare. The focus of this paper is not that personal responsibility is needed in order to give individuals proper incentives, but to address the question of when it would be fair to hold people responsible.

Inspired by the work of Rawls and Dworkin, different versions of equal opportunity ethics have been developed.11^–19 All versions, however, share the view that individuals should be held responsible for some, but not all, factors affecting their situation, and in this paper we take this general characterisation of equal opportunity ethics as our starting point. The ideal of equal opportunity ethics can thus be seen as consisting of two parts: (1) a principle of equalisation stating that inequalities due to non-responsibility factors should be eliminated; (2) a principle of responsibility stating that people should be held accountable for differences due to responsibility factors.

Any interpretation of equal opportunity ethics thus has to deal with two core questions. First, how do we define the responsibility cut—that is, what factors should individuals be held responsible for? Second, what does it mean to hold a person responsible for a certain set of factors? The answers to these questions determine what is considered a just society from the perspective of equal opportunity ethics.

The most common answer to the first question is to hold people responsible for factors that are considered within their control, which we in the following will refer to as their (free and informed) choices, but not for factors that are considered to be beyond their control, such as a person’s natural and genetic abilities.11^–13 20^–24 In this paper, we adopt this view, and we consider how new genetic information and new genetic technology may result in relocation of the responsibility by changing our view of what is to be considered the result of individual choices and by introducing new possibilities for individuals.

The second question is sometimes answered by holding people responsible for the actual consequences of their choices. Many of the standard objections to introducing responsibility for choices in healthcare, raised for example by Daniels and Dworkin, are mainly directed towards this view.9 14^–17 25^–29 This interpretation of the responsibility principle cannot, however, be part of a theory that also endorses the principle of equalisation.30 31 The actual consequences of individual choices typically depend on a wide range of factors beyond individual control, and to hold individuals responsible for the actual consequences of their choices would therefore violate the principle of equalisation because it would imply that people are partly held responsible for factors beyond their control. Given the principle of equalisation, people should face the fair consequences of their choices. There are different interpretations of what the fair consequences of individual choices are, but the arguments of this paper do not rely on any specific view on this question.32 The crucial point for our analysis is that it is not sufficient to have information about individual outcomes in order to assign responsibility in a just manner. An equal opportunity approach aims to hold people responsible for their choices, and thus also requires information about the actual choices that people have made.

To summarise, genomics may provide two types of information that are needed in order to achieve the ideal of equal opportunity. Firstly, it may provide information that is crucial in determining the responsibility cut. Secondly, it may provide information that is crucial in assigning individual responsibility for choices in a just manner. In the absence of such information, healthcare policies may deviate from the ideal of equal opportunity by holding individuals responsible for both too much and too little.

The paper is organised as follows. In the next section, we consider in more detail how new genetic information may affect the way we assign individual responsibility for choices for a given responsibility cut. In the third section, we turn to the question of how genomics may result in relocation of the responsibility cut by providing both new information and new technology. In the fourth section, we discuss how genomics may affect healthcare policies and the market for health insurance. The final section contains concluding remarks.

ASSIGNING INDIVIDUAL RESPONSIBILITY FOR INDIVIDUAL CHOICES

According to equal opportunity ethics, a fair healthcare system should hold people responsible for their choices. Commonly, however, people are instead held responsible for their health status, because it is difficult to obtain reliable information about individual choices. This practice may create two kinds of unfairness. Firstly, it may violate the principle of equalisation, because people who make the same choices may be treated differently. Secondly, it may violate the principle of responsibility, if people are not at all held accountable for their choices.

To illustrate, consider the medical problem of raised serum cholesterol concentrations.33 It is well established that this medical condition is a result of both genetic factors and individual lifestyle choices, even though there is some disagreement about the relative importance of each of these factors.34 Consider now two individuals (or two groups of individuals) who live the same kind of life—that is, make the same lifestyle choices—but where one individual has familial hypercholesterolaemia and, as a result, a much higher serum cholesterol concentration and thus a higher risk of cardiovascular disease. In this case, the principle of equalisation requires special treatment of this individual, such that the two individuals (or the two groups) ideally face the same risk for heart diseases. In the absence of genetic information, however, such a system is not possible unless one follows a policy that completely equalises the risk of heart disease for all individuals.

A policy that aims to completely equalise the risk of heart disease violates the principle of responsibility, because it does not hold people responsible at all for lifestyle choices. If two individuals (or two groups) with the same genetic disposition live very different lives and as a consequence they have very different serum cholesterol concentrations, the principle of responsibility justifies unequal treatment of the two individuals (or groups) in the sense that they end up facing different risks of having a heart disease. The problem again is that, without genetic information, we are not in a position to assign responsibility in this way. We will not know for sure whether the high serum cholesterol concentration reflects a difference in lifestyle or a difference in genetic disposition. Of course, we should not expect genetic information to give us an exact answer to this question, but the recent developments in genetic testing for familial hypercholesterolaemia should radically improve our ability to introduce considerations of responsibility for lifestyle choices, and not only for health status, in the design of a healthcare system.

Obesity, which is a tremendous health problem in both the developed and the developing world, represents another interesting example.35 36 It has been common to assume that observed differences in obesity reflect different lifestyle choices with respect to diet and exercise, and this can probably explain why obesity has not received serious attention in most healthcare systems. Recent research in genomics, however, has made clear that some people are genetically predisposed towards a slower metabolism. The neglect of obesity as a public healthcare problem has thus effectively implied that this group has been held responsible for a factor beyond their control.37 The important point is that individuals with the same level of obesity may have made very different lifestyle choices, and people with very different levels of obesity may have made the same lifestyle choices. In order to treat people in a fair manner, these differences need to be taken into account. A fair healthcare system should capture the special obligations that we have towards people who are genetically disposed to obesity, and at the same time accept differential treatment of individuals on the basis of differences in lifestyle choices. This implies also taking into account other factors that may be beyond individual control, such as socioeconomic background, culture and the effects of marketing and regulations, a point we return to below.38

It should be noted that, even if we in these examples have focused on the possibility of equalising and differentiating among individuals with respect to health outcomes, the same arguments apply if we instead want to implement the ideal of equal opportunity ethics by differentiating the payment for health services. Our core point is that equal opportunity ethics aims to hold people responsible for choices, and not for health status, and we have illustrated how new genetic information may contribute to this aim.

RELOCATING THE RESPONSIBILITY CUT

Modern genetics may affect where the responsibility cut is drawn in two distinct ways.39 Firstly, developments in genetics may relocate the responsibility cut in an epistemic way by affecting which factors we view as being within or beyond the control of individuals. In particular, genomics may show that a factor initially thought to be under individual control is determined by certain genetic traits. In this way, new knowledge may change the way we think of what society is obliged to do to help groups of disadvantaged people. Secondly, genetics may also potentially relocate the responsibility cut by providing new technologies that may make it possible for individuals to affect factors that were previously beyond individual control.40

To illustrate how genomics may affect the responsibility cut in an epistemological way, consider the case of compulsive gambling. Traditionally, public healthcare systems have not viewed the treatment of compulsive gamblers as their responsibility. Presumably, this has been because of the common concept that gambling reflects free and informed choices of individuals. Recent research on the neurobiology of addiction has questioned this view, and suggests that some people are genetically disposed to gambling behaviour. These findings, together with the recent deregulation of the market for gambling in many countries, may help to explain why compulsive gambling is now gaining recognition as a significant public health issue.41 42 This acknowledgement of compulsive gambling as a public health issue is in line with the ideal of equal opportunity ethics. If gambling behaviour does not reflect a free and informed choice of an individual, then compulsive gamblers should not be held responsible for the consequences of gambling and should not bear the costs of treatment.

In most cases, behaviour will not be fully determined by genetic factors. People’s behaviour will also reflect other factors beyond individual control, such as a person’s socioeconomic background.43 However, even if society recognises that people’s choices to some extent are shaped by factors beyond individual control, both genetic and socioeconomic, it does not need to abandon any attempt to hold individuals responsible for their choices. Roemer13 23 24 has suggested one way of defining the responsibility cut in situations where non-responsibility factors partly shape our behaviour, but where individuals are still seen as free to make choices. According to Roemer, society should hold individuals responsible for their choices relative to the section of the population that is identical with them with respect to non-responsibility factors. To illustrate, in the context of smoking, individuals should not be held responsible for their smoking behaviour as such, but their behaviour relative to the section of population that share the same set of factors beyond individual control that shape the smoking behaviour. Within this framework, new genetic information may radically relocate the responsibility cut by redefining the reference groups for individuals.

To illustrate how genomics may affect the responsibility cut in a technological way, consider the possibility of targeted alterations of genomes, where one may turn off some genes that causally contribute to the emergence of certain illnesses. Gene replacement therapy is at an experimental stage and only a few cases of such trials have been published, but this technology may turn out to be relevant for diseases such as phenylketonuria, Gaucher disease, hypercholesterolaemia and diabetes.44 If this technology succeeds, it may create new choices for individuals, because individuals may now be placed in a position where they can affect factors that were previously beyond their control, namely their genetic dispositions.45

What does it mean to hold individuals responsible for these new choices? Let us consider a situation where individuals can choose whether or not to undergo gene replacement therapy. The principle of equalisation requires that people that make the same choices—for example, the choice not to undergo gene replacement therapy—ideally should end up with the same health outcome. In other words, new technology does not imply that society no longer has an obligation to treat diseases caused by genetic deficiencies that could have been prevented by gene replacement therapy.

A more common and pressing problem relates to choices following from genetic testing of the fetus. Typical examples are genetic testing for Tay–Sachs disease, Huntington disease and Down syndrome. With widespread testing becoming the norm, rather than the special case, the pressure on prospective parents increases. As it is now possible to collect prenatal information about the fetus, parents today face a different choice from parents of previous generations. Today’s parents have much more genetic information about the fetus when they make a decision about whether to give birth or not. Does this imply that people who decide to give birth to a disabled child should be held responsible for the additional costs of bringing up this child? Not at all; the principle of equalisation requires ideally that all parents who choose to give birth to a child should face the same consequences, given that the genetic dispositions of their child are completely beyond their control. Hence, society would continue to have substantial obligations towards assisting families with disabled children even in the presence of the possibility of genetic testing of the fetus.

SOME IMPLICATIONS FOR HEALTH POLICIES AND INSURANCE MARKETS

Current healthcare policies can deviate from the ideal of equal opportunity ethics in two important ways. Firstly, healthcare policies can hold individuals responsible for too much by holding them accountable for factors beyond their control. This is arguably the case for healthcare systems that have not given much priority to diseases such as obesity and compulsory gambling, which commonly and mistakenly have been seen as mainly a result of individual choices. Secondly, healthcare systems may hold individuals responsible for too little—for example, by giving statins to people with moderately raised concentrations of serum cholesterol that are a result of free and informed lifestyle choices.

Better genetic information can potentially help to avoid these two problems, by enabling society to implement policies that equalise opportunities to a greater extent. Better genetic information, however, may also result in larger deviations from the ideal of equal opportunity ethics if it is made available to agents who are not motivated by a desire to equalise opportunities. Such information could, for example, make it easier to discriminate against individuals with specific genetic dispositions in the market for health insurance and thus increase inequalities due to factors beyond individual control.

Let us first show how genetic information may enable us to implement healthcare policies that are in line with the ideal of equal opportunity ethics. Consider the question of when co-payments are appropriate for the treatment of particular behaviour-related illnesses. Co-payments may be appropriate in cases where factors beyond individual control, such as genetic dispositions, do not play an important part in determining health outcomes, because, in such cases, a system of co-payment will treat individuals who make the same choices in the same manner.30 Hence, it satisfies the principle of equalisation. It also satisfies the principle of responsibility by differentiating between individuals who make different choices. Certain types of dental healthcare may be a case where such a policy may be justifiable. Co-payments are not appropriate, however, when there are large individual variations in health outcome due to factors beyond individual control, which, for example, is the case for smoking. Although smoking undoubtedly increases the probability of getting lung cancer, the increased risk depends to a large extent on the genetic susceptibility to tobacco-induced lung cancer. In such a case, the best way to hold individuals responsible for their smoking behaviour would be to levy a tax on tobacco products that finances the treatment of those smokers that become sick.30 25 Such a policy would be in line with both the principle of equalisation and the principle of responsibility in cases where we manage to successfully treat people (early screening and treatment for lung cancer would be a case in point). The health outcome would be the same for all individuals, but the financial costs would be distributed in proportion to the tobacco consumption. If smoking behaviour is considered to be partly determined by genetic disposition or socioeconomic factors, then such a tax policy should ideally be modified to take this into account. This may, for example, be achieved by allocating some of the money that is collected from a tax on tobacco to targeted information campaigns among disadvantaged groups. It should be noted that, if genomics tells us that behavioural factors play only a minor role in determining health outcomes, then equal opportunity ethics justifies comprehensive health coverage for everyone without co-payments.

A commonly expressed concern is that new genetic information may be used by market actors in ways that would harm particularly vulnerable groups—for example, by denying them access to health insurance or by discrimination in employment.4 Political steps have been taken in many countries to avoid this development. By way of illustration, the US Senate passed the Genetic Information Discrimination Act of 2005 by a vote of 98 to 0. This prohibits the improper use of genetic information by health insurers and employers.46 There has been little resistance from market actors to this political development, which is probably because new genetic information has, so far, not been very effective in predicting common diseases. However, this may easily change if further progress is made in genetic research. One plausible scenario for the future is therefore that market actors will lobby in favour of allowing some genetic discrimination in market transactions.

New genetic information can be seen as lifting a veil of uncertainty about individual risk factors. In the market place, this veil has ensured a certain measure of equalisation by allowing the pooling of risk among individuals with different genetic dispositions. If insurance coverage or employment is influenced by genetic information, insurance premiums or employment policies may tend to discriminate against people who have a higher risk than others through no fault of their own. Individuals with high risk would be forced to pay higher premiums and there would be less equalisation through the health insurance market. Genetic discrimination would thus violate the principle of equalisation, which requires elimination of inequalities due to factors beyond individual control. Equal opportunity ethics therefore provides a powerful argument against allowing such genetic discrimination in the insurance market.

CONCLUDING REMARKS

In this paper we argue that genetic information has had, and will continue to have, a profound effect on our views of a just distribution of health and healthcare in society. We have argued that genomics can provide us with information necessary to come closer to the ideal of equal opportunity ethics. Lack of genetic information has led to health policies that in some cases hold people responsible for too much and in some cases hold them responsible for too little. Recent advances in genomics may thus not only improve clinical practice and public health, but also help us to design fairer health policies. Genetic information, however, may also have adverse effects on the distribution of healthcare and healthcare costs if it is made available to agents who are not motivated by a desire to equalise opportunities. Such information could, for example, make it easier to discriminate against individuals with specific genetic dispositions in the market for health insurance and thus increase inequalities due to factors beyond individual control.

The implications of genomics will be different in different healthcare systems. Societies differ in how much weight they at present attach to these concerns.47 The policy challenges of the new genomics can therefore be radically different and depend on the cultural and institutional context in which they arise. In societies that have mainly focused on equalisation of health status, new genetic knowledge may provide arguments for limited introduction of personal responsibility for lifestyle choices. In societies that to a large extent have held individuals responsible for their health status, genomic advances may provide arguments in favour of focusing more on eliminating inequalities due to factors beyond individual control.