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 [...]
Tagged disclosure, family, identity, perception, selfWhen one decides to get tested they normally have themselves and any existing or future children in mind. However if a mutation is discovered, they suddenly find themselves thrown into the position of both decision maker and messenger in relation to their extended family members.
Is revealing genetic information to the family a duty, a choice [...]
The right not to know is an intriguing concept in this information age. Can knowledge be damaging? And within the genetic moral code, can ignorance be bliss?
Once genetic information is revealed without request, the potential carrier has to deal with the implications of this knowledge while not having the time to emotionally prepare. The privilege [...]
Ethical questions around the disclosure of genetic information to family members can contribute to the nature versus nurture debate. A transmitted mutation is given by nature, but it is in being informed of its existence that behaviour may change.
Although genetic information is inherently familial, to expect it to be distributed between all family members is [...]
In the classic Greek tragedy, the first stage in the tragic chain of events is the Hamarita - the fatal flaw. Hamartia, an injury committed in ignorance (when the person affected or the results are not what the agent supposed they were) seen as an error in judgment or unwitting mistake. Another common interpretation of [...]
Tagged flaw, mistake, moral, PGD, tragedyAccording to sociologist Anthony Giddens, one of the defining features of late modernity is that risk has become an organising principal at both the institutional and individual level:
“Traditional cultures didn’t have a concept of risk because they didn’t need one. Risk isn’t the same as hazard or danger. Risk refers to hazards that are actively [...]
Where does our perception of danger come from? Fear as an evolutionary instinct exists to assist survival. Some fears are often viewed as instinctual, such as the fear of the dark or of predatory animals. These fears are no longer attached to the actual threat that inspired them, but seen as ‘evolutionary fears’ written into [...]
Tagged evolution, fear, imagination, risk, threat, uncertaintyThe interesting thing in treating this kind of behaviour as an expression of parental protection is that it is a measure aiming to protect the child not from an imminent danger but from risk. The focus on avoidance rather than treatment is a result of our “Risk Society” and reflection of a Health & Safety [...]
Tagged protection, risk, threatArribus-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 [...]
From Hallowell: “…previous research suggests that genetic testing may, indeed, lead to negative emotions such as guilt, blame and resentment within the family and these may have a deleterious effect on family relationships (e.g. Tibben et al. 1992, Chapple et al. 1995, Fanos and Johnson 1995).”
What is this deleterious effect? The existence of blame in [...]