Additional findings from advanced genomic test: exploring understandings and implications
This four year PhD studentship leads to a joint PhD with Groningen University, Netherlands and University of Southampton, UK. The research focuses on exploring the ethical, legal and social issues raised by incidental findings – or findings not related to the clinical question that led to the test – from whole genome analyses. In particular it will analyse the temporal nature of such findings and how the shifting sands of the terminology (e.g. secondary/additional/looked-for/not pertinent etc findings) impact on clinical practice and testees’ understandings regarding the results of advanced genomic tests. Southampton is one of the 11 first wave NHS Genomic Medicine Centres recruiting patients to Genome England’s 100,000 Genomes Project providing a rich source of recruits for empirical ethics and social science research through the clinical ethics and law unit. The ELSi research group in the genetics department at UMCG Groningen performs closely related research with roughly 6000 patients referred annually for genetic/genomic investigations. This PhD will explore some of the communication challenges around the use of novel broad genetic technologies and the range of possible predictive results that arise. For example, how can clinical practice best adapt to the generation of multiple (and sometimes unexpected) predictions from a single test and how might results be recalled and acted upon (eg, surveillance, risk reducing treatments) over the years following a genome test?
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