Questions regarding the perception of personal responsibility arise from the difference in attitude between tested carriers and non-carriers of genetic mutation. The paper “Guilt, blame and responsibility: men’s understanding of their role in the transmission of BRCA1/2 mutations within their family” (Hallowell et al 2006) brings together the accounts of men who were tested positive and negative and the contrast in their idea of responsibility in light of their carrier status:
“…Many of these non-carriers described how they would have accepted the responsibility for genetic transmission if they had been identified as carriers. Airan would have been ‘mortified’ and felt ‘so guilty, rotten and worthless’, Alan would rather have ‘died there and then’ and Pete said he would have felt ‘like a murderer’ had they discovered that they had ‘passed on’ a mutation to their children. Strong words indeed, and words that have an important role to play in the presentation of self, for it can be argued that the expression of such sentiments, in such a way, enables these men to construct themselves as caring and responsible parents.”
The strong words present an outsider’s perception of genetic responsibility and of the act of potentially transmitting a mutation. As Hallowell writes “they see themselves as the hypothetical agents of genetic transmission – of actively (albeit unintentionally) passing on a mutation to their children.” However they are only in this position hypothetically, and according to her research would probably responded otherwise if they had been diagnosed as carriers.
The interesting thing is, that the actual carriers did not feel like ‘murderers’. Once the positive status has been established they chose to develop a fatalistic approach to the transmission of the mutation.
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