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 of taking the passive approach to one’s future health is taken away, and fatalism or unawareness as exonerating factors can no longer be valid. The informant has confiscated the legitimacy of adopting any passive ways of coping in retrospect.
While genetic knowledge gives one the freedom to make well-informed life choices, ignorance provides the freedom to make such choices without having to consider potential genetic future implications. As the parent who brought a carrier child into the world without knowing of the familial mutation cannot be blamed like the parent who was aware of their genetic makeup. The genetically ignorant is free from the burden of genetically responsible reproductive considerations.
According to Graeme Laurie the opportunity to choose to remain in ignorance is based on considerations of autonomy of privacy. “Providing a person with unsolicited information about genetic risk (that is, taking away a decision to remain in complete ignorance of a familial risk) may diminish the self-determinative component of their autonomy. This is because providing a person with information about their genetic risk could undermine their ability to make their own decisions (for example, whether or not to remain in ignorance), and could also be seen as paternalistically deciding what is best for another person.” Leonard and Newson
By legitimising the right not to know, can anyone be expected to disclose their genetic information with relatives?
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