title: Ethical issues in cancer genetics: I 1) whose information is it?
abstract: This article presents and discusses four clinical cases that exemplify the complexity of ethical dilemmas concerning the provider's obligation to disclose or withhold genetic information from patients. Case 1: What is the responsibility of the cancer genetics provider to ensure that a positive test results is shared with distant relatives? Case 2: To ensure that results go to at-risk relatives, do we have the right to ignore the wishes of the designated next-of-kin? Case 3: Do we have the right to reveal a familial BRCA1 mutation to a patient's relative, who is at 50% risk? Case 4: Do we have an obligation to reveal that a patient is not a blood relative and therefore, not at risk to have inherited a familial mutation? These cases form the basis for discussing the provider's dual obligations to keeping patient confidentiality and informing patients and families about risk (i.e. duty to warn). We also provide a summary of consensus points and additional discussion questions for each case.
authors.affiliation: Department of Adult Oncology, Dana-Farber Cancer Institute, 44 Binney Street, SM331, Boston, MA 02115, USA. Katherine_Schneider@DFCI.harvard.edu
authors.forename: Katherine A
authors.initials: KA
authors.lastname: Schneider
authors.forename: Anu B
authors.initials: AB
authors.lastname: Chittenden
authors.forename: Kelly J
authors.initials: KJ
authors.lastname: Branda
authors.forename: Meredith A
authors.initials: MA
authors.lastname: Keenan
authors.forename: Steven
authors.initials: S
authors.lastname: Joffe
authors.forename: Andrea Farkas
authors.initials: AF
authors.lastname: Patenaude
authors.forename: Hazel
authors.initials: H
authors.lastname: Reynolds
authors.forename: Karin
authors.initials: K
authors.lastname: Dent
authors.forename: Sonja
authors.initials: S
authors.lastname: Eubanks
authors.forename: Jill
authors.initials: J
authors.lastname: Goldman
authors.forename: Bonnie
authors.initials: B
authors.lastname: Leroy
authors.forename: Nancy Steinberg
authors.initials: NS
authors.lastname: Warren
authors.forename: Kelly
authors.initials: K
authors.lastname: Taylor
authors.forename: Cate Walsh
authors.initials: CW
authors.lastname: Vockley
authors.forename: Judy E
authors.initials: JE
authors.lastname: Garber
mesh_terms: D048868:Adaptor Proteins, Signal Transducing; D000310:Adrenal Gland Neoplasms / Q000235:genetics*; D000328:Adult; D001943:Breast Neoplasms / Q000556:secondary*; D002352:Carrier Proteins / Q000235:genetics; D003110:Colonic Neoplasms / Q000235:genetics*; D003219:Confidentiality; D004995:Ethics, Professional; D005260:Female; D016158:Genes, p53 / Q000235:genetics; D005817:Genetic Counseling; D005823:Genetics / Q000941:ethics*; D006801:Humans; D008297:Male; D000070957:MutL Protein Homolog 1; D009687:Nuclear Proteins / Q000235:genetics; D010051:Ovarian Neoplasms / Q000235:genetics*; D014342:Truth Disclosure
chemical_list: D048868:Adaptor Proteins, Signal Transducing; D002352:Carrier Proteins; C501486:MLH1 protein, human; D009687:Nuclear Proteins; D000070957:MutL Protein Homolog 1