Genetic Information in Families: Rethinking Confidentiality

Abstract

Rapid advances in DNA-based technology raise the possibility that in the next 20 years we shall have the capability to acquire large amounts of genetic information about individuals at reasonable cost and to use that information to prevent or ameliorate disease. The discovery of genetic information from which one can infer increased risk of future disease poses a challenge to the traditional expectation of confidentiality in health care. Unlike most other medical information, genetic information derived from one person may immediately permit an inference about important health or reproductive risk faced by blood relatives. In this article, I discuss the familial nature of genetic information and offer examples of information that could be of significant medical importance to others, review some public health-based exceptions to the confidentiality principle, discuss current practices and policy positions relating to the limited disclosure of genetic information to relatives, comment on relevant judicial decisions, and argue that physicians should have a right in some circumstances to make limited disclosures about important risks to relatives even over the objection of the individual from whom the risk information was derived.