TY - JOUR

T1 - Rare diseases in healthcare priority setting:

T2 - Measuring Health: Ethical Perspectives

AU - Albertsen, Andreas

PY - 2022/9

Y1 - 2022/9

N2 - Rare diseases pose a particular priority setting problem. The UK gives rare diseases special priority in healthcare priority setting. Effectively, the National Health Service is willing to pay much more to gain a quality-adjusted life-year related to a very rare disease than one related to a more common condition. But should rare diseases receive priority in the allocation of scarce healthcare resources? This article develops and evaluates four arguments in favour of such a priority. These pertain to public values, luck egalitarian distributive justice the epistemic difficulties of obtaining knowledge about rare diseases and the incentives created by a higher willingness to pay. The first is at odds with our knowledge regarding popular opinion. The three other arguments may provide a reason to fund rare diseases generously. However, they are either overinclusive because they would also justify funding for many non-rare diseases or underinclusive in the sense of justifying priority for only some rare diseases. The arguments thus fail to provide a justification that tracks rareness as such.

AB - Rare diseases pose a particular priority setting problem. The UK gives rare diseases special priority in healthcare priority setting. Effectively, the National Health Service is willing to pay much more to gain a quality-adjusted life-year related to a very rare disease than one related to a more common condition. But should rare diseases receive priority in the allocation of scarce healthcare resources? This article develops and evaluates four arguments in favour of such a priority. These pertain to public values, luck egalitarian distributive justice the epistemic difficulties of obtaining knowledge about rare diseases and the incentives created by a higher willingness to pay. The first is at odds with our knowledge regarding popular opinion. The three other arguments may provide a reason to fund rare diseases generously. However, they are either overinclusive because they would also justify funding for many non-rare diseases or underinclusive in the sense of justifying priority for only some rare diseases. The arguments thus fail to provide a justification that tracks rareness as such.

KW - Rare Diseases

KW - priority setting

KW - health

KW - healthcare

KW - ethics

KW - fairness

KW - luck egalitarianism

KW - luck egalitarianism in health

KW - health care for specific diseases/groups

KW - philosophical ethics

KW - allocation of health care resources

KW - health economics

KW - Quality-Adjusted Life Years

KW - Social Justice

KW - State Medicine

KW - Humans

KW - Delivery of Health Care

U2 - 10.1136/medethics-2020-106978

DO - 10.1136/medethics-2020-106978

M3 - Journal article

C2 - 34103369

VL - 48

SP - 624

EP - 628

JO - Journal of Medical Ethics

JF - Journal of Medical Ethics

SN - 0306-6800

IS - 9

Y2 - 18 June 2020 through 18 June 2020

ER -