Clinical genetics and its adjacent regimes

Abstract

Clinical genetics is the prime application of genetics in healthcare, providing highly advanced and reliable diagnostics for patients with (mostly rare) disease of genetic origin. Whereas many novel technologies have expanded the genetic toolkit, integration or alignment with other areas of healthcare is often challenging. We hypothesise that this is due to the characteristics inherent to the regimes in which the genetic technologies were to be implemented. In order to facilitate integration of genetic applications in a rebooting and perhaps transforming healthcare system, we here provide insights in discrepancies between clinical genetics and four of its adjacent regimes; public health, human genetic research, non-genetic healthcare, and society. We conducted twelve semi-structured group interviews and a focus group to collect information on overlapping and distinctive elements of each regime. We identified three aspects in which the adjacent regimes differed considerably compared to clinical genetics; perception of data, expectations from technologies, and compartimentalisation units. Strikingly, divergence within each of these aspects was determined by elements of culture, and not - as is often thought - by elements of structure, e.g. regulation and policy. We conclude that implementation of genetics requires transdisciplinary empathy - understanding of the way of organizing, thinking and doing in adjacent regimes.