Another potential reason for keeping genetic information secret (even from those for whom the knowledge will be beneficial) stems from genetic shame. Does genetic shame discourages the carrier from acting? The idea of genetic shame is puzzling but familiar; people are often ashamed of their race, sexual orientation, appearance or disabilities, even though all of [...]
Also tagged disclosure, family, identity, perceptionArribus-Allyson distinguishes between two forms of blame: internal states of the person (self-blame) or ethico-moral attributions to other persons (other-oriented responsibility). Self blame is intertwined with notions of guilt, however genetic other-oriented blame in the family sphere is more complex.
Holding one’s parents culpable for biological suffering has severe implications. Not only is this an action [...]
The testimonials of carriers and non-carriers reveal a definition of responsibility derived from a desire to portray oneself as a responsible parent. Looking at the differences between the reaction to positive or negative test results, it seem that the need to align the parent’s perception of self with a defensible definition of responsible behaviour triggers [...]
Also tagged creative, narrativeAs families and citizens are refigured in a ‘genetic network’ (Armstrong 1998) or through forms of ‘biosociality’ (Rainbow, 1996) the individual needs to find ways to define their autonomy to themselves and to society.
The spotlight on shared genetic material alludes to the biological association (Arribus-Allyson et all, 2008) suggesting not only anatomical, but behavioural similarities [...]
The genes or mutations can be seen as bonding agents, fusing the individual into the group. However, being identified as part of this group biologically can diminish one’s autonomy over their body, privacy and life decisions. Genetic diagnosis gives us a glimpse of potential futures (Hallowell, et all 2006) and as a result can alter [...]
Also tagged autonomy, future, identity, narrative