What Your Genes Know Affects Them: Should Patient Confidentiality Prevent Disclosure of Genetic Test Results to a Patient's Biological Relatives?

摘要

In order to achieve the promised goals of the rapidly evolving field of genomics, namely, the early detection, treatment, and potential elimination of genetic disease, it is essential to assure patients considering genetic testing that they will be able to control the dissemination of the genetic information that such testing reveals. This should be accomplished by the adoption of legislation that clearly protects the patient's privacy rights over such information. While health care providers should educate their patients about the "familial nature" of genetic test results and encourage them to involve their relatives in the testing process, they should not be required to divulge this information to others without the express consent of the patient. The sole exception would be when the patient is a minor child. Although the duty to warn serves a public health purpose in the case of communicable and infectious diseases, genetic diseases are qualitatively different and should therefore be excluded from any statutory or common law duty to warn. When patient consent is obtained, health care providers should not divulge the information to a patient's relatives without first receiving their informed consent. This is necessary due to the potentially devastating psychological, emotional, and economic effects that genetic information can have on individuals. Finally, if the patient's genetic information reveals a condition that cannot be prevented or treated, the health care provider should be given the residual right to refrain from revealing it to individuals other than the patient. No matter how the legal issues pertaining to the duty to disclose genetic information are resolved, it is essential that all primary care physicians receive appropriate training and education in genetics and that all individuals who decide to undergo genetic testing receive appropriate genetic counseling by trained professionals, both prior to and after the administration of genetic testing.