title: Constructing access in predictive medicine. Comparing classification for hereditary breast cancer risks in England, Germany and the Netherlands.
abstract: In the first decade of the twenty-first century, predictive forms of medicine, largely associated with genetics, have become increasingly prominent. This has given rise to questions about the social consequences of this development, for example with regard to the distribution of health care access. Drawing on qualitative interviews with clinic staff and public officials and on document analyses, we analyse how access to risk assessment and monitoring for hereditary breast cancer predispositions in Germany, the Netherlands and England is produced through the interaction of risk classification and health care organisation. For each of the three countries, we show how particular combinations of genetic testing and family history data, classification of risks and allocation of monitoring services in practice contribute to specific forms of inclusion and exclusion. Thus, we show how risk assessment and monitoring in Germany attributes a large role to genetic testing; how family history information plays a large role in the Netherlands; and how regional differences in health care have a significant influence in England. On the basis of our case study, we argue that health care organisation is an important facet of the allocation of health care access, as it plays an important role in mediating the influence of risk assessment technologies and risk categories in health care access. We conclude that the allocation of risk assessment and monitoring in predictive medicine deserve more extensive political attention.
authors.affiliation: Maastricht University, Maastricht, Netherlands. e.aarden@maastrichtuniversity.nl
authors.forename: Erik
authors.initials: E
authors.lastname: Aarden
authors.forename: Ine
authors.initials: I
authors.lastname: Van Hoyweghen
authors.forename: Klasien
authors.initials: K
authors.lastname: Horstman
mesh_terms: D001943:Breast Neoplasms / Q000235:genetics*; D003695:Delivery of Health Care / Q000458:organization & administration*; D004739:England; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D005858:Germany; D006297:Health Services Accessibility; D006801:Humans; D008487:Medical History Taking; D009426:Netherlands; D019982:Organizational Case Studies; D036301:Qualitative Research; D018570:Risk Assessment