Doing the right thing: genetic risk and responsibility

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Abstract

This paper reports the findings of an interview study of women (n = 40) attending genetic counselling for hereditary breast/ovarian cancer (HBOC). The analysis indicates that women who attend genetics clinics perceive themselves as having a responsibility to their kin (past, present and future generations) to establish the magnitude of their risk and the risks to other family members, and to act upon this information by engaging in some form of risk management. It is observed that in acknowledging their genetic responsibility for their kin these women not only relinquished their right not to know about their risks, but also committed themselves to undertaking risk management practices which may have iatrogenic consequences. It is argued that the construction of genetic risk as a moral issue can be seen as limiting the choices which are available to women who attend genetic counselling.

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