Inherited Medullary Thyroid Cancer and the Duty to Warn: Revisiting Pate v. Threlkel in Light of HIPAA
- 1 February 2005
- journal article
- other
- Published by Mary Ann Liebert Inc in Thyroid®
- Vol. 15 (2), 140-145
- https://doi.org/10.1089/thy.2005.15.140
Abstract
Familial medullary thyroid cancer (FMTC) is one of the few autosomal dominant cancers for which genetic testing provides a clear medical indication for prophylactic and/or curative therapy, and for which prophylactic thyroidectomy, followed by thyroid hormone replacement, presents a relatively low morbidity risk. Medullary thyroid cancer (MTC) is a particularly aggressive type of thyroid cancer, and screening by traditional biochemical markers yields a high proportion of advanced stage diagnoses in individuals from FMTC families. This is particularly hazardous since there are no curative systemic treatments for MTC. Genetic testing for germline mutations of the RET proto-oncogene provides a reliable method of identifying at-risk family members in those FMTC families in which a mutation has been identified in the proband. Prophylactic thyroidectomy in such at-risk family members has significantly reduced the proportion of advanced stage MTC diagnoses in MTC families. Since a clear medical benefit exists for genetic testing in family members, and a clear danger to family members exists in the absence of genetic counseling, establishing genetic diagnosis as standard of care has critical legal and ethical implications for medical providers caring for probands and family members. The "duty to warn," reinforced by the courts in the legal case of Pate v. Threlkel, may override recent confidentiality legislation, known as the HIPAA Privacy Rules, which came into effect April 12, 2003.Keywords
This publication has 34 references indexed in Scilit:
- Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up StudyJournal of Clinical Oncology, 2003
- Reoperations after prophylactic mastectomy with or without implant reconstructionCancer, 2003
- Divergent Ethical Perspectives on the Duty-to-Warn Principle With HIV PatientsEthics & Behavior, 2003
- Medical geneticists' duty to warn at‐risk relatives for genetic diseaseAmerican Journal of Medical Genetics Part A, 2003
- Genetic information and the family: are we our brother's keeper?Trends in Biotechnology, 2002
- The Family Covenant and Genetic TestingAmerican Journal of Bioethics, 2001
- GENETIC COUNSELING: Clinical and Ethical ChallengesAnnual Review of Genetics, 1998
- Familial Disclosure in Defiance of NonconsentAmerican Journal of Human Genetics, 1998
- Genetic Links, Family Ties, and Social Bonds: Rights and Responsibilities in the Face of Genetic KnowledgeJournal of Medicine and Philosophy, 1998
- Low frequency of germline mutations in the RET proto‐oncogene in patients with apparently sporadic medullary thyroid carcinomaClinical Endocrinology, 1995