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Ethical Issues in Cancer Genetics: 1) Whose Information Is It?
Author(s) -
Schneider Katherine A.,
Chittenden Anu B.,
Branda Kelly J.,
Keenan Meredith A.,
Joffe Steven,
Patenaude Andrea Farkas,
Reynolds Hazel,
Dent Karin,
Eubanks Sonja,
Goldman Jill,
Leroy Bonnie,
Warren Nancy Steinberg,
Taylor Kelly,
Vockley Cate Walsh,
Garber Judy E.
Publication year - 2006
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/s10897-006-9053-4
Subject(s) - obligation , duty to warn , confidentiality , cancer genetics , genetic counseling , genetic testing , duty , medical genetics , medicine , next of kin , psychology , family medicine , cancer , genetics , law , political science , biology , gene
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.