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, selfSo do contrasts in perception of responsibility depend upon the level of involvement? Those who experience it first hand as carriers, (or even non-carriers within a carrier family) seem to see a wider spectrum to the debate, while non-carriers or are more judgemental and build a more precise definition of their view on right and [...]
Also tagged carrier, moral, non-carrierQuestions 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 [...]
Also tagged BRCA, carrier