Questions around the ownership of genetic information also relate to perceptions of autonomy and hierarchy within the family. A family as a group is made of individuals that are often not viewed or treated as equals. Perceptions of ownership are legally and culturally accepted within the traditional family structure.
What is the status of children? Do [...]
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, identity, perception, selfThe 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 [...]
Arribus-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 [...]
Is fatalism a positive or negative approach to genetically predicted illness? All forms of fatalistic belief, exempt the individual from any personal responsibility, intentions or free will. However can we even use fatalism as a legitimate approach in light of genetic knowledge? Before genetic testing, there was no way to know exactly which genes one [...]
Also tagged belief, fatalism, predeterminedMen of the Mosuo society, who live around Lugu Lake on the border between Yunnan and Sichuan Provinces, China, do help to raise kids—just not their own, with whom the men typically have only limited relationships. Instead the men help look after all the children born to their own sisters, aunts, and other women of [...]
Also tagged gene, identity, sense, structureAs 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 [...]
Inheriting a ‘closed future’ is not limited to genetic disorders, in many families children are destined to marry, provide care or go into the family business and their future path is written for them before they are born.
The obligation to continue in the parents footsteps and provide for the relatives or keep the family trade [...]