title: Disclosure of Huntington's disease to family members: the dilemma of known but unknowing parties.
abstract: Predictive genetic testing presents unique issues in the legal and ethical debate concerning disclosure of information within the physician-patient relationship. A duty to disclose information to family members has been found when the disclosure is likely to result in the ability to mitigate the damaging effects of the disease. When evaluating the situation where a individual is at risk of Huntington's disease, the analysis must be different, as shown in this paper, and necessitates an ethical and legal examination of the consequences of receipt of the information on family members, those known but unknowing parties who are at risk of inheriting a genetic disease. This paper analyzes the potential legal duty of a physician to disclose or withhold genetic information from the family members of patients. Existing statutes governing genetic information do not directly address the interests of family members. Courts that have ruled on the duty to disclose medical or genetic information have analyzed these issues using traditional concepts of tort law. Yet the situation presented by Huntington's disease is unique and demands a different framework for analysis, given the late onset and lack of curative or ameliorative treatment. This paper also analyzes the ethical standards to be invoked when considering violating the privacy of a patient or a family member. The principles of autonomy and self-determination of family members are considered, versus the risk of harm and the privacy interest in not knowing potentially devastating information.
authors.affiliation: Unit for Health Rights and Ethics, Gertner Institute for Epidemiology and Health Policy Research, Sheba Medical Center, Tel Hashomer, Israel. rinah@gertner.health.gov.il
authors.forename: R
authors.initials: R
authors.lastname: Hakimian
mesh_terms: D003219:Confidentiality / Q000331:legislation & jurisprudence / Q000523:psychology; D017007:Duty to Warn / Q000331:legislation & jurisprudence; D004992:Ethics, Medical; D005192:Family Health; D005817:Genetic Counseling / Q000331:legislation & jurisprudence* / Q000523:psychology*; D006801:Humans; D006816:Huntington Disease / Q000235:genetics* / Q000523:psychology*; D007557:Israel; D010353:Patient Education as Topic / Q000331:legislation & jurisprudence; D018907:Privacy / Q000331:legislation & jurisprudence / Q000523:psychology; D014342:Truth Disclosure; D014481:United States