Clinical genetics and the problem with unqualified confidentiality.

Abstract

In his article “A Defense of Unqualified Medical Confidentiality,” Kipnis provides a persuasive argument as to why maintaining unqualified confidentiality is the most effective way of preventing harm to third parties in the health-care setting (Kipnis 2006). However, difficulties emerge when it is applied to the field of clinical genetics. The familial context of clinical genetics means that routine sharing of information is a fundamental aspect of good clinical practice. We argue that, reflecting this premise of sharing information in clinical genetics, the most effective way to prevent harm to third parties is to advocate a “qualified confidentiality.” In making this claim, we challenge two assertions Kipnis relies upon in his argument for upholding unqualified confidentiality: 1) that unqualified confidentiality combined with attempts at “creative” means to elicit disclosure to at-risk third parties is the most effective way to minimise harm; and 2) that under unqualified confidentiality, individuals will actually become more likely to take responsibility for their own actions and health (Kipnis 2006, 7). We illustrate this challenge with reference to the following Case of The Ill Father: Steve and Jenny separated 10 years ago but still see the same doctor. Their daughter Kate is 16 years old and lives with Jenny, along with a younger brother and sister. Recently, Steve has been diagnosed with a form of bowel cancer called Familial Adenomatous Polyposis (FAP), a genetic condition that causes small polyps to develop in the bowel. These polyps develop into cancer if left unchecked but screening and surgical intervention reduces morbidity and mortality. Because Steve carries the FAP gene mutation, Kate has a 50% chance of inheriting it as well. If she knew of this risk, Kate could choose to have a genetic test and if positive, commence annual screening. However, Kate is not aware and Steve has said he does not plan to tell her.