Discovery of Children's Carrier Status for Recessive Genetic Disease: Some Ethical Issues
carrier status, privacy, genetic information, ethics
Knowledge of one's carrier status for recessive genetic diseases is useful primarily in making marital and reproductive decisions. These decisions are peculiarly the private domain of the young adults who are dating, mating, and forming new families. The privacy of these decisions may be compromised when parents know the carrier status of their children. Thus, the practice of sharing that information with the parents of fetuses, babies, and minor children ought to be discouraged, out of respect for the autonomy and privacy of these children when they become adults.
Dena S. Davis, Discovery of Children's Carrier Status for Recessive Genetic Disease: Some Ethical Issues, 2 Genetic Testing 323 (1998)