The evolving duty to disclose the presence of genetic disease to relatives.
Under the aegis of the Human Genome Project, research laboratories are identifying the genetic bases of human diseases almost daily. This explosion in molecular biology has raised many medical-legal issues about genetic information, such as privacy, discrimination, and insurability. Less appreciated is another issue that faces physicians who deal with genetic information in their practices--their duty to disclose a genetic disease to relatives of their patients who have the disease. Few cases have addressed the issue directly, and there has been little statutory and policy development in this area. However, because a physician's diagnosis of a genetic disease could have such a profound impact on the patient's relatives, there is a developing duty to consider disclosing genetic information to relatives. The case law and policy that support such disclosure reflect the evolution of medicine and the law away from paternalism toward an expanded concept of legal and moral duty. Since genetic information is presumed to be confidential by the law, as is essentially all medical information, guidelines need be developed regarding a physician's duty to disclose a genetic disease to a patient's relatives. These guidelines should consider the patient, the genetic test, the disease, and the third-party relative. Disclosure should be considered for a disease that is serious or fatal, treatable or curable, and transmitted dominantly with high penetrance. Specifics notwithstanding, these policies should be developed by physicians who care for patients and their families, not by lawyers and ethicists with no clinical training.
University of California, San Diego 92161, USA. ljdeftos@ucsd.edu
L J
LJ
Deftos
D004992:Ethics, Medical; D005190:Family; D030342:Genetic Diseases, Inborn; D006801:Humans; D007603:Jurisprudence; D014342:Truth Disclosure; D014481:United States