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.
- [show abstract] [hide abstract]
ABSTRACT: The history of genetics has concentrated on eugenics in the first half of the 20th century and molecular genetics in the second. There is yet little historical analysis of the emergence of genetics as a medical specialism, even for the USA. This paper explores the creation of a regional genetic service in Manchester, UK. It surveys the ways in which hereditary diseases were managed and investigated in the first two decades of the NHS (1948-68), and the marginality of geneticists in this period. It suggests that the emergence of consultant geneticists as conspicuous service specialists depended heavily on their ability to create and control laboratory and counselling services for antenatal diagnosis, especially of Down's syndrome, from the late 1960s. These services, for syndromes that were not strongly hereditary, helped extend the meaning of 'genetic' in medicine from 'hereditary' to 'related to chromosomes and genes'. The services received government support because of popular demand for diagnoses (following the Abortion Act of 1967), because 'preventive services' were seen as cost effective, and because geneticists could argue that inadequate counselling might give rise to legal difficulties. By linking laboratory services and counselling, geneticists offered an integrated service, in line with other consultant-led services (e.g. for kidneys) which linked research, laboratory services, clinical work, and education/public health functions. We suggest such services fitted the hospital-dominated political economy of medicine which underlay the NHS re-organisation of 1974; and that the salience of the new genetics owed much to this combination of high-science and public concern. Geneticists were then able to integrate molecular genetics into key regional centres, so shaping the initial phases of the 'molecular' revolution. We maintain that this local study offers useful wider insights, not only into the development of a key specialism, but also into the changing dynamics of research and policy in the NHS.Social Science [?] Medicine 12/1999; 49(9):1227-38. · 2.73 Impact Factor
Article: Breast and ovarian cancer.New England Journal of Medicine 07/2003; 348(23):2339-47. · 51.66 Impact Factor
- [show abstract] [hide abstract]
ABSTRACT: The discovery linking the genes BRCA1&2 to familial breast cancer played an important role in the clinical practice of geneticists and physicians. The availability of genetic tests for BRCA gene mutations prompted cancer geneticists to give information about genetic risk and to assess many women with a personal or family history of breast or ovarian cancer to inform them of preventive measures. These consist mainly of breast self-examination, mammography screening, chemoprevention and prophylactic surgery (mastectomy, oophorectomy). This paper examines clinical practices related to hereditary breast cancer testing and introduces a number of results from a survey carried out, between 1996 and 1998, in three clinics located in Montreal (Quebec, Canada), Marseilles (France) and Manchester (Great Britain). Results show substantial differences in the way cancer geneticists deal with environmental risk factors, breast and ovarian cancer testing, and chemoprevention and prophylactic surgery. Differences across cities persist in the multivariate analysis, suggesting that attitudes towards preventive measures may be partially explained by cultural factors. Different dimensions of culture are discussed including the social representation of health and risk, the interpretation of scientific evidence and the role of innovation leadership.Social Science [?] Medicine 03/2004; 58(6):1085-96. · 2.73 Impact Factor