Autonomy

Autonomy in Health Economics and Health Technology Assessment

Respect for autonomy asks that a person able to decide is given the information and room to accept or refuse a test or treatment, and that the decision is respected. In health economics it sits in tension with the aim of getting the most health from a fixed budget, because a payer that funds every option people prefer gives up health elsewhere, while a payer that funds only the most cost-effective option overrides some people's own judgement of what is good for them. Health technology assessment (HTA) handles this tension in its ethical analysis, and some outcome measures now record autonomy directly as part of wellbeing.

Respect for autonomy among the four principles

The most influential principlist approach to bioethics, set out by Beauchamp and Childress, names four principles, namely respect for autonomy, non-maleficence, beneficence and justice. The HTA Core Model of the European network for Health Technology Assessment (EUnetHTA) describes respect for autonomy as a norm of respecting the decision-making capacities of autonomous persons. The principles are prima facie binding, so each counts in every situation but none is absolute, and they must first be specified for the context and then balanced when they conflict.

The Core Model calls one conflict highly relevant for HTA, between autonomy and beneficence for single persons on one side and the just distribution of resources and beneficence for society on the other. That is the economist's problem of opportunity cost stated in ethical terms.

The NICE guide Social value judgements (second edition, 2008) adopted the same four principles, describing them as simple, accessible and culturally neutral. It said that respect for autonomy recognises the right of individuals to make informed choices about healthcare, health promotion and health protection, and that the idea of patient choice arises from it. It added that the principle cannot apply universally, because some people cannot make informed choices owing to mental or physical incapacity and some public health measures, such as smoking bans in enclosed spaces, must be imposed on whole populations. NICE's Our principles (web page, version read 14 October 2026) have replaced the social value judgements and keep the same balance, stating that people have the right to make informed choices about the care they receive, but that not everyone can make their own choices and not everything people might want will necessarily be available.

Individual sovereignty in welfare economics and extra-welfarism

Autonomy has an economic counterpart in welfare economics. Brouwer and colleagues list four tenets of the neoclassical framework, one of which is individual sovereignty, the view that individuals are themselves the best judges of what contributes most to their utility and by how much. In markets this appears as consumer sovereignty, where people's own choices and willingness to pay reveal value. A second tenet, consequentialism, holds that utility comes only from outcomes, not from the processes that produced them, although a growing literature on process utility allows people to value how a decision is reached.

Extra-welfarism relaxes these tenets. It lets sources of value other than the affected individuals count, and Brouwer and colleagues note that decision makers may act as they think they ought to act rather than as the people they represent would act, so extra-welfarism may be inherently paternalistic. Coast and colleagues trace how Culyer drew on the capability approach in building the extra-welfarist perspective, which gave a theoretical basis for using the QALY and in 2008 was accepted as the basis for evaluation by NICE. They add that it is not a direct application of capability, because its concern is with functioning and maximisation is retained.

The capability approach itself gives autonomy more weight. Al-Janabi and colleagues explain that it assesses capability, what a person can do, rather than functioning, what they actually do, to avoid imposing a particular idea of what a good life is and to reflect the importance of freedom to choose. Cost-utility analysis therefore faces a choice between measuring health achieved and measuring the options open to people.

Agency between clinician and patient

In a consultation the clinician usually knows more about the options, and this information asymmetry creates a principal-agent problem. Gafni, Charles and Whelan compare two agency models. In the physician as perfect agent model the patient delegates authority, and the challenge is for the physician to find out the patient's preferences. In the informed treatment decision-making model the patient keeps the authority and the physician's role is to transfer information clearly and without bias.

Both reach the same outcome in theory, but they argue that transferring information to patients is easier, though not easy, than transferring each patient's preferences to the physician. Elwyn and colleagues place shared decision making on the same ground, writing that it rests on accepting individual self-determination as a desirable goal and that self-determination does not mean that individuals are abandoned. Their model draws on relational autonomy, which sees decisions as shaped by relationships and mutual dependence.

A decision aid is the usual tool for supporting autonomous choice. The 2024 Cochrane review by Stacey and colleagues covered 209 trials with 107,698 participants and found that decision aids probably increase the match between informed values and the care chosen (risk ratio 1.75). Consultations were 1.5 minutes longer when the aid was used during the consultation, with no difference when it was used beforehand, and the authors called for studies of downstream effects on cost and resource use.

How HTA examines autonomy

The HTA Core Model 3.0 includes ethical analysis as one of its nine domains, and autonomy is one of six topics in it, with benefit-harm balance, respect for persons, and justice and equity among the others. The autonomy topic covers four issues.

The Core Model states that patients in most cases have a right to be self-governing agents, which includes the right to decide whether to use or take part and the right to receive relevant information. It also says that technologies used for vulnerable groups need special ethical analysis because of their diminished autonomy.

One method the Core Model describes is the axiological or Socratic approach developed by Hofmann, a checklist of 32 questions on general moral issues, including patient autonomy, as well as on stakeholders, methods, the technology and the HTA process. The findings feed the appraisal alongside the clinical and economic evidence.

Autonomy as an outcome in capability measures

The measures used to build QALYs typically focus on health-related quality of life. The ICECAP-A, developed for adults by Al-Janabi, Flynn and Coast from interviews with 36 adults in the UK, instead has five attributes of capability wellbeing, namely stability, attachment, achievement, autonomy and enjoyment. Informants described a desire to be independent and to be their own person, and the authors note that poor health limits autonomy, for example through dependence on medication.

The lay term chosen for the attribute was independence, and it is almost identical to an attribute of the ICECAP-O measure for older people. Because the ICECAP-A treats health as an influence on wider wellbeing, an intervention that preserves independence without changing health-related quality of life can still register a benefit.

Worked example of the health cost of honouring a preference

All numbers in this example are illustrative. A payer compares option A, a clinic injection, with option B, the same drug as a tablet at home, which many patients prefer. The payer values options by net health benefit at an illustrative cost-effectiveness threshold of GBP 20,000 per QALY.

$$\text{NHB}_j = E_j - \frac{C_j}{k}$$

where $\text{NHB}_j$ is the net health benefit of option $j$ in QALYs, $E_j$ is the QALYs per patient, $C_j$ is the cost per patient in GBP and $k$ is the threshold in GBP per QALY.

As measured, B costs GBP 1,000 more and yields 0.04 fewer QALYs, so A dominates. Each patient who chooses B gives up 1.10 minus 1.01, or 0.09 QALYs of net health benefit, made up of 0.04 QALYs the patient forgoes and 1,000 / 20,000, or 0.05 QALYs, lost by other patients whose care is displaced. If 500 patients choose B the total is 500 times 0.09, or 45 QALYs, of which 500 times 0.05, or 25 QALYs, falls on others. Funding B is efficient only if the value of being able to choose home treatment, which the QALY measure did not capture, is worth at least 0.09 QALYs per patient, or 0.09 times 20,000, which is GBP 1,800, at the threshold.

The calculation does not settle the question but gives respect for autonomy a stated price, which a committee can compare with the value of choice estimated by a discrete choice experiment or a capability measure.

Boundaries with related concepts

Informed consent is the procedure through which autonomy is exercised in a single decision, and informed consent for research applies it to trial participation. Shared decision making respects autonomy without leaving the patient to decide alone. Advance care planning extends a person's choices to a time when capacity may be lost. Informed choice is narrower, naming a decision in which a person understands the relevant facts and acts in line with their own values, the result that respect for autonomy aims to secure.

Consumer sovereignty is narrower than autonomy, a claim about whose valuations count in welfare economics rather than about who decides what happens to a person's own body and care. A payer can respect autonomy by never imposing treatment while still declining to fund some options, as NICE's principles do. Autonomy also differs from justice and equity, which concern how benefits and costs are shared across people.

Common misreadings of autonomy in health care funding

One misreading is that autonomy gives a right to any treatment a person wants. Respect for autonomy protects the right to accept or refuse what is offered, while the range offered is set by the budget and by justice. NICE's 2008 Social value judgements stated that respect for autonomy and individual choice should not mean that NHS users as a whole are disadvantaged by guidance recommending interventions that are not clinically or cost effective.

A second is that QALY maximisation is neutral about autonomy. Extra-welfarist analysis chooses on behalf of a population, and Brouwer and colleagues accept that it may be paternalistic, which is why HTA adds a separate ethical analysis.

A third is that respecting autonomy means leaving patients to decide unaided. Elwyn and colleagues reject this reading, and the Core Model treats the information and support a technology needs as part of the assessment. A fourth is that autonomy always wins. The Core Model treats every principle as prima facie and expects it to be balanced, and the NICE principles name incapacity and limited availability as limits.

Sources

• Al-Janabi H, Flynn TN, Coast J. Development of a self-report measure of capability wellbeing for adults: the ICECAP-A. Quality of Life Research. 2012;21(1):167-176. https://doi.org/10.1007/s11136-011-9927-2
• Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 7th ed. New York: Oxford University Press; 2012.
• Brouwer WBF, Culyer AJ, van Exel NJA, Rutten FFH. Welfarism vs. extra-welfarism. Journal of Health Economics. 2008;27(2):325-338. https://doi.org/10.1016/j.jhealeco.2007.07.003
• Coast J, Smith RD, Lorgelly P. Welfarism, extra-welfarism and capability: the spread of ideas in health economics. Social Science & Medicine. 2008;67(7):1190-1198. https://doi.org/10.1016/j.socscimed.2008.06.027
• Elwyn G, Frosch D, Thomson R, et al. Shared decision making: a model for clinical practice. Journal of General Internal Medicine. 2012;27(10):1361-1367. https://doi.org/10.1007/s11606-012-2077-6
• EUnetHTA Joint Action 2, Work Package 8. HTA Core Model, version 3.0. 2016. Ethical analysis domain. Archived copy https://web.archive.org/web/2023id_/https://www.eunethta.eu/wp-content/uploads/2018/03/HTACoreModel3.0-1.pdf
• Gafni A, Charles C, Whelan T. The physician-patient encounter: the physician as a perfect agent for the patient versus the informed treatment decision-making model. Social Science & Medicine. 1998;47(3):347-354. https://doi.org/10.1016/S0277-9536(98)00091-4
• Hofmann B. Toward a procedure for integrating moral issues in health technology assessment. International Journal of Technology Assessment in Health Care. 2005;21(3):312-318. https://doi.org/10.1017/S0266462305050415
• National Institute for Health and Care Excellence. Our principles. https://www.nice.org.uk/about-us/our-principles (accessed 14 October 2026).
• National Institute for Health and Clinical Excellence. Social value judgements: principles for the development of NICE guidance. Second edition. London: NICE; 2008.
• Stacey D, Lewis KB, Smith M, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews. 2024;(1):CD001431. https://doi.org/10.1002/14651858.CD001431.pub6