In the UK post-mortem genetic testing for SADS has been available since 2004; however this technology has yet to be widely employed following suspected SADS related deaths. The implication of this is that many deaths are misdiagnosed and due to the genetic nature of SADS conditions family members are then at risk of suffering the same fate. Whereas an accurate genetic diagnosis could result in family members receiving testing and treatment to prevent the deadly arrhythmia.
This research aims to establish why these tests are not engaged with during the death investigation by Coroners and Pathologists. In this way the research extends debates of the ‘Usefulness’ of genetic testing beyond the clinical setting.
The focus of this research is on the process of post-mortem genetic testing for SADS; from the suspected SADS related death, to the genetic test and cascade screening for family members of the deceased. Utilising the expert accounts of Coroners, Pathologists, and Clinicians, this research hopes to be able to understand why this process is not currently working on a large scale and how it can potentially work in the future.