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 to assume that a family is a well-functioning group of equals. Family relationships are always emotionally charged, and while these strong emotions can result in a unique closeness and mutual compassion they may also lead to estrangement, revenge, jealousy and grudge. Tolstoy famously said that “every unhappy family is unhappy in its own way”, therefore it cannot be presumed that there is one model for familial relationships, through which patterns of behaviour can be expected. So if one family member discovers their mutation carrier status, are there any guarantees that other relatives will be informed?
According to genetic counsellor Clara Gaff, “qualitative evidence suggests that emotional rather than biological ties will influence who is told about a risk in the family.” So the agents of nurture are favoured in this case, even though the information is predominantly biological and could be expected to be distributed according to patterns of nature.
Gaff points out that when contemplating disclosure, there is also a need for the individual to assess their family members’ vulnerability to the information as well as their receptivity. So the way one’s personality and behaviour are again perceived as more significant than biological proximity.
So what is the moral stance around the disclosure of genetic information? Has a carrier who did not tell his distant family members acted irresponsibly? What is worse, holding back knowledge that may change someone’s life or taking away their right not to know?
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