Constitutions of justice in genetic medicine: distributing diagnostics for familial hypercholesterolemia in three European countries

Abstract

While developments in genetic medicine are widely considered to bring forward pressing policy challenges, the question how genetic diagnostics are integrated into and distributed within existing health-care infrastructures has virtually been ignored. This paper addresses the distribution of genetic diagnostics through the framework of bioconstitutionalism, which suggests that basic categories for the allocation of rights and duties in law and policymaking are redefined together with and through specific scientific and technological ways of understanding and intervening in life. The paper thus analyzes the coproduction of diagnostic and distributive approaches to familial hypercholesterolemia (FH), a hereditary form of high cholesterol, in the Netherlands, the United Kingdom and Germany. It describes how a commitment to a genetically narrow screening program in the Netherlands reflects a commitment to providing care to specific subcommunities of people at risk; how a broad and predominantly phenotypic understanding of FH in the United Kingdom can be understood in terms of an emphasis on comprehensive population coverage and how the framing of high cholesterol as a regular risk factor in Germany expresses a rule-bound notion of justice. The paper thus suggests that particular culturally situated imaginations of distributive justice in the distribution of health-care resources underwrite the formation of diagnostic and distributive arrangements. The paper thereby proposes that bioconstitutionalism can provide a valuable contribution to (comparative) health policy analysis by lying bare how policies affect individual access to medical care.