Consent and Confidentiality in Genetics: Whose Information is it Anyway?

• Author: Kent, A.
• Position: Abstracts

1. Kent, Consent and Confidentiality in Genetics: Whose Information is it Anyway? 29 J. MED. ETHICS 16 (2003).

Genetic information does not apply uniquely to individuals alone. Knowledge of one person's genetic status permits inferences about those to whom he or she is related. In most cases these will be of so little power or reliability as to be trivial, but in a number of instances, most notably those connected with significant single gene disorders, the inferences may be substantial. In such a situation, if I know something about myself, does my brother or sister have a right to know it too, given that it also may affect them? At what point is my wish to protect my privacy overridden by their wish or need to know in order to avoid potentially harmful consequences?

Against a background of increasing regulation regarding access to medical information and the preservation of patients' confidentiality, the case of genetic...