title: Ethical issues and policy analysis for genetic testing: Huntington's disease as a paradigm for diseases with a late onset.
abstract: This paper discusses the main ethical issues that arise when testing for genetic diseases with a late adult onset, such as Huntington's disease, take place. It is imperative to study genetic testing for HD and similar diseases because of the potential to influence future medical advances and the growing number of individuals who are considered pre-symptomatic. The main ethical issues are consent and privacy, prenatal testing and its implications, in addition to insurance discrimination. These issues are viewed from the perspective of genetic counselors, patients, the families of patients, and insurance companies. Policies put forth by the United States National Society of Genetic Counselors ("NSGC"), the Task Force on Genetic Testing, and the President's Council for Bioethics are also analyzed. Finally, new recommendations are proposed in order to ameliorate the ethical dilemmas encountered in genetic testing. These recommendations are largely based on existing policies and therefore involve amending current policies rather than revamping them.
authors.affiliation: 373 Commonwealth Ave., Apt. #103, Boston, MA 02115, USA.
authors.forename: Anjali
authors.initials: A
authors.lastname: Lilani
mesh_terms: D000025:Abortion, Eugenic / Q000941:ethics; D026683:Advisory Committees; D017668:Age of Onset; D005190:Family; D005817:Genetic Counseling / Q000941:ethics; D005820:Genetic Testing / Q000941:ethics*; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis* / Q000235:genetics; D007258:Informed Consent / Q000941:ethics; D007348:Insurance, Health; D011050:Policy Making; D011287:Prejudice; D011296:Prenatal Diagnosis / Q000941:ethics; D018570:Risk Assessment; D012952:Societies; D014481:United States