Confidentiality, privacy and genetic testing

Abstract

Many people are willing to have genetic tests to provide information about their health status, although they might not fully understand the profound implications of the test results until these are explained to them. The people who want to know are not only the individuals affected by a disease condition, but also their relatives their sons and daughters, the fiancees of engaged offspring, uncles, aunts and cousins and even totally extraneous persons or bodies, such as insurance companies and employers. Depending, of course, on the circumstances of particular cases such individuals may claim that they have a legitimate right to information that directly or indirectly relates to them. The ethical problems regarding confidentiality and privacy are to decide whom to include within the limits of confidentiality and under what circumstances they to be included. The relatives of an individual who tested positive for a genetic condition not only claim that they have a right to know of any results that could affect them but they themselves become entitled to their own privacy and to the confidentiality of their own test results.