Personal paper: Late onset genetic disease: where ignorance is bliss, is it folly to inform relatives?

Abstract

One aspect of the rapid advances in molecular genetics is the capacity to identify genetic predispositions in a particular individual, where previously we made risk assessments based on aggregate or population observations. 1 2 Specific genetic data on one person unavoidably involve the family. They reveal information not only about the person examined but about their relatives and future children, who may be sick or carriers of the disease or trait. The proband, the family, and the genetic counsellor are faced with the problem of communicating news of the high risk for a genetic disease to healthy (asymptomatic) family members. They are also faced with making a moral choice between the right of family members to be privy to this information and their right to “blissful ignorance.” #### Summary points Most genetic counsellors believe that family members have a moral obligation to share genetic information with each other.3 Many counsellors also believe that an uninvited approach to relatives at risk for a genetic disease is ethically questionable, irrespective of the disease. The Danish Ethics Council recently stated that “no unsolicited approach may be made by the health authorities in the case of an examination that may show any hereditary disease in the family. This should also be the case in situations where it can …