Uncertain risk genetic screening for susceptibility to haemochromatosis


The uncertainty associated with new genetic predictive testing for diseases, like genetic haemochromatosis (GH), has problematised the notion of genetic risk. The paper draws on semistructured interviews with clinicians and affected individuals carrying the genetic mutation for haemochromatosis. The paper shows how the clinical notions of risk can become ambiguous, the distinction between risk and susceptibility lost and the two terms used interchangeably to explain the risk of Haemochromatosis. The paper seeks to develop the notion of uncertain risk to argue how an undifferentiated usage of risk/susceptibility predictions in clinical practice are understood and assimilated by healthy individuals at the receiving end of uncertain genetic risk assessments of their personal susceptibility to GH.