How gene tests travel: Bi-national comparison of the institutional pathways taken by diagnostic genetic testing for Maturity Onset Diabetes of the Young (MODY) through the British and the German health care system

Abstract

Scientific developments in genetics receive great public and political attention. However, genetic tests as medical innovations need to travel from the laboratory to the individual patient in order to fulfil the goal that makes the science so attractive. A medical innovation has to pass through the institutions of diverse health care systems. This thesis compares how the structures of two very different health care systems in Europe (Germany and the UK) foster or hinder the diffusion of genetic technologies. It presents a detailed analysis of the institutional pathways involved in order to discuss whether and in which way the kind of medical innovation that genetic testing represents is accommodated. The case study used for analysing the passage of a genetic test in both countries is diagnostic testing for Maturity Onset Diabetes of the Young (MODY). This example has the idiosyncratic dimension that it had strong support by scientists and government when the UK Government prioritized genetics in health policy. However, MODY testing was chosen for this study because MODY is a ‘simple’ monogenetic test, and it is one of the few at present that are both reliable and lead to altered treatment with a better quality of life for the patient. MODY represents, according to the current state of genomic knowledge, a prime example of what genetics is likely to deliver at best over the coming decades. In brief, the comparison of the pathways MODY travelled and the degree to which it reached patients successfully shows that both systems are not optimally set up to exploit what MODY genetic testing has to offer, but that the vertical structure and centralization in the UK system fit the needs of genetic medical innovations better than the horizontal, diversified and market oriented structures dominating the German health care system.