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Journal of Genetic Counseling

, Volume 15, Issue 6, pp 491–503 | Cite as

Ethical Issues in Cancer Genetics: 1) Whose Information Is It?

  • Katherine A. Schneider
  • Anu B. Chittenden
  • Kelly J. Branda
  • Meredith A. Keenan
  • Steven Joffe
  • Andrea Farkas Patenaude
  • Hazel Reynolds
  • Karin Dent
  • Sonja Eubanks
  • Jill Goldman
  • Bonnie Leroy
  • Nancy Steinberg Warren
  • Kelly Taylor
  • Cate Walsh Vockley
  • Judy E. Garber
Original Paper

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.

KEY WORDS

ethical issues ethical dilemmas cancer genetic counseling genetic testing confidentiality issues. 

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Copyright information

© National Society of Genetic Counselors, Inc. 2006

Authors and Affiliations

  • Katherine A. Schneider
    • 1
  • Anu B. Chittenden
    • 1
  • Kelly J. Branda
    • 1
  • Meredith A. Keenan
    • 1
  • Steven Joffe
    • 2
  • Andrea Farkas Patenaude
    • 2
  • Hazel Reynolds
    • 3
  • Karin Dent
    • 4
  • Sonja Eubanks
    • 5
  • Jill Goldman
    • 6
  • Bonnie Leroy
    • 7
  • Nancy Steinberg Warren
    • 8
  • Kelly Taylor
    • 9
  • Cate Walsh Vockley
    • 10
  • Judy E. Garber
    • 1
  1. 1.Department of Adult OncologyDana-Farber Cancer InstituteBostonUSA
  2. 2.Department of Pediatric OncologyDana-Farber Cancer InstituteBostonUSA
  3. 3.Department of MO-HMDana-Farber Cancer InstituteBostonUSA
  4. 4.University of UtahSalt Lake CityUSA
  5. 5.University of North Carolina Greensboro/Genetic Counseling ProgramGreensboroUSA
  6. 6.University of California San Francisco Memory & Aging CenterSan FranciscoUSA
  7. 7.University of MinnesotaMinneapolisUSA
  8. 8.Genetic Counseling ProgramUniversity of CincinnatiCincinnatiUSA
  9. 9.Vanderbilt University Medical CenterNashvilleUSA
  10. 10.Children’s Hospital of PittsburghPittsburghUSA

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