When 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 or a crime? Even without any family member going through genetic screenings others can often suspect the genetic risks to their health by knowing the family’s medical history. Is information obtained through family gossip perceived as less damaging than information obtained through scientific facts? Does it have less severe implications as it allows the receiver to enjoy the benefit of the doubt?
Social scientists and ethicists distinguish between active or passive non-disclosure. Where the active approach implies to the carrier makes a conscious decision not to tell their family, and the passive approach means that even though the carrier intended to do so, the information has not been passed.
If the carrier decided that disclosure is the right thing to do, how can they passively neglect to pass the information? Could it have something to do with people’s tendency to “shoot the messenger” when being informed of bad news?
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