The Double Helix: Applying an Ethic of Care to the Duty to Warn Genetic Relatives of Genetic Information

Bioethics

Volumn 30, Issue 3, 2016, Pages 181-187

  Weaver, Meaghann ^a  

^a ST JUDE CHILDREN S RESEARCH HOSPITAL   (United States)

Author keywords

Confidentiality; Duty to warn; Ethic of care; Genetic testing; Privacy

Indexed keywords

AUSTRALIA; CONFIDENTIALITY; CONFLICT; CONSCIENCE; DOCTOR PATIENT RELATION; ETHICS; FAMILY; GENETIC PREDISPOSITION; GENETIC PRIVACY; GENETIC SCREENING; GENETICS; HUMAN; INFORMED CONSENT; LEGISLATION AND JURISPRUDENCE; MEDICAL ETHICS; MEDICOLEGAL ASPECT; NEOPLASM; PERSONAL AUTONOMY; PHYSICIAN ATTITUDE; PRIVACY; PSYCHOLOGY; PUBLIC POLICY; STANDARDS; TRENDS; UNITED STATES;

AUSTRALIA; CONFIDENTIALITY; CONFLICT (PSYCHOLOGY); CONSCIENCE; DUTY TO WARN; ETHICS, MEDICAL; FAMILY; GENETIC PREDISPOSITION TO DISEASE; GENETIC PRIVACY; GENETIC TESTING; HUMANS; INFORMED CONSENT; LEGISLATION, MEDICAL; NEOPLASMS; PERSONAL AUTONOMY; PHYSICIAN'S ROLE; PHYSICIAN-PATIENT RELATIONS; PRIVACY; PUBLIC POLICY; UNITED STATES;

EID: 84958762609     PISSN: 02699702     EISSN: 14678519     Source Type: Journal    
DOI: 10.1111/bioe.12176     Document Type: Article

References (50)

1. N. Samuel, A. Villani, C.V. Fernandez and D. Malkin. Management of familial cancer: sequencing, surveillance and society. Nat Rev Clin Oncol 2014; 11(12): 723-731.
2. I. Bache, K. Brondum-Nielsen and N. Tommerup. Genetic counseling in adult carriers of a balanced chromosomal rearrangement ascertained in childhood: Experiences from a nationwide reexamination of translocation carriers. Genet Med 2007; 9(3): 185-187.
3. M.E. Sharff, T.A. DeMarco, D. Mays, B.N. Peshkin, H.B. Valdimarsdottir, J.E. Garber, et al. Parenting through genetic uncertainty: Themes in the disclosure of breast cancer risk information to children. GeneT Test Mol Biomarkers 2012; 16(5): 376-382.
4. M. Harris, I. Winship and M. Spriggs. Controversies and ethical issues in cancer-genetics clinics. Lancet Oncol 2005; 6(5): 301-310.
5. K.I. Aktan-Collan, H.A. Kaariainen, E.M. Kolttola, K. Pylvanainen, H.J. Jarvinen, A.H. Haukkala, et al. Sharing genetic risk with next generation: mutation-positive parents' communication with their offspring in Lynch Syndrome. Familial Cancer 2011; 10(1): 43-50.
6. C. Julian-Reynier, F. Eisinger, P. Vennin, F. Chabal, Y. Aurran, C. Nogues, et al. Attitudes towards cancer predictive testing and transmission of information to the family. J Med Genet 1996; 33(9): 731-736.
7. M. Palmor & A. Fiester. Incidental findings of nonparentage: a case for universal nondisclosure. Pediatrics 2014; 134(1): 163-168.
8. M.E. Sharff, T.A. DeMarco, D. Mays, B.N. Peshkin, H.B. Valdimarsdottir, J.E. Garber, et al. Parenting through genetic uncertainty: Themes in the disclosure of breast cancer risk information to children. Genet Test Mol Biomarkers 2012; 16(5): 376-382.
9. K.I. Aktan-Collan, H.A. Kaariainen, E.M. Kolttola, K. Pylvanainen, H.J. Jarvinen, A.H. Haukkala, et al. Sharing genetic risk with next generation: mutation-positive parents' communication with their offspring in Lynch Syndrome. Familial Cancer 2011; 10(1): 43-50.
10. M. Harris, I. Winship and M. Spriggs. Controversies and ethical issues in cancer-genetics clinics. Lancet Oncol 2005; 6(5): 301-310.
11. C.A. Cassa, S.K. Savage, P.L. Taylor, R.C. Green, A.L. McGuire & K.D. Mandl. Disclosing pathogenic genetic variants to research participants: quantifying an emerging ethical responsibility. Genome Res 2012; 22(3): 421-428.
12. T.E. Power & J. Robinson. Cancers related to genetic mutations: important psychosocial issues for Canadian family physicians. Canadian Family Physician 2006; 52(11): 1425-1431.
13. S. Shiloh, B.-S. Ronit & G. Keinan. Effects of controllability, predictability, and information-seeking style on interest in predictive genetic testing. Personality Soc Psychol Bull 1999; 25: 1187-1195;
14. J. Audrain, B. Rimer, D. Cella, J. Garber, B.N. Peshkin, J. Ellis, et al. Genetic counseling and testing for breast-ovarian cancer susceptibility: what do women want? J Clin Oncol 1998; 16(1): 133-138.
15. J.L. Benkendorf, J.E. Reutenauer, C.A. Hughes, N. Eads, J. Willison, M. Powers, et al. Patients' attitudes about autonomy and confidentiality in genetic testing for breast-ovarian cancer susceptibility. Am J Med Genet 1997; 73(3): 296-303.
16. K. Forrest, S.A. Simpson, B.J. Wilson, E.R. van Teijlingen, L. McKee, N. Haites, et al. To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clin Gen 2003; 64(4): 317- 326.
17. K.P. Tercyak, B.N. Peshkin, T.A. DeMarco, B.M. Brogan & C. Lerman. Parent-child factors and their effect on communicating BRCA1/2 test results to children. Patient Educ Couns 2002; 47(2): 145- 153.
18. M.J. Falk, R.B. Dugan, M.A. O'Riordan, A.L. Matthews & N.H. Robin. Medical geneticists' duty to warn at-risk relatives for genetic disease. Am J Med Gene 2003; 120A(3): 374-380.
19. A. Clarke, M. Richards, L. Kerzin-Storrar, J. Halliday, M.A. Young, S.A. Simpson, et al. Genetic professionals' reports of nondisclosure of genetic risk information within families. Eur J Hum Gen 2005; 13(5): 556-562.
20. President's Commission for The Study of Ethical Problems in Medicine and Biomedical and Behavioural Research. Screening and Counselling for Genetic Conditions. Washington DC: US Government Printing Office; 1983.
21. American Society of Human Genetics Statement. Professional Disclosure of Familial Genetic Information. The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure. Am J Hum Genet 1998; 62(2): 474-483.
22. K. Berg, R.F. Chadwick, J.M. Cantu, A.S. Daar, K. Kato, D.R.J. Macer, J.J. Mulvihill, T.H. Murray, C.M. Romeo-Casabona, I. Verma & Z. Xiaomei. Human Genome Organization (HUGO) Statement on Pharmacogenomics (PGx): Solidarity, Equity and Governance. Genomics, Society, and Policy 2007; 3: 44-47.
23. American Medical Association Code of Medical Ethics' Opinions on Genetic Testing. AMA Opinion 2.131. Disclosure of Familial Risk in Genetic Testing. Virtual Mentor 2009; 11(9): 683-685.
24. M.E. Robson, C.D. Storm, J. Weitzel, D.S. Wollins & K. Offit. American Society of Clinical Oncology (ASCO) Policy Statement Update: Genetic and Genomic Testing for Cancer Susceptibility. J Clin Oncol 2010; 28(5): 893-901
25. American Society of Clinical Oncology. American Society of Clinical Oncology (ASCO) Policy Statement Update: Genetic Testing for Cancer Susceptibility. J Clin Oncol 2003; 21(12): 2397-2406.
26. United Nations Educational Scientific and Cultural Organization (UNESCO). International Declaration on Human Genetic Data. Geneva: UNESCO, 2003.
27. Tarasoff v. Regents of the University of California (Cal. 1976).
28. E.W. Clayton. What should the law say about disclosure of genetic information to relatives? J Health Care Law Policy 1998; 1(2): 373-390.
29. Rhodes v. Illinois Central Gulf Railroad (1996). S & C Company v. Home SEd (Va. 1977).
30. Pate v Threlkel (Fla 1995).
31. Safer v Estate of Pack (NJ 1996).
32. Schroeder v Perkel (NJ 1981).
33. Molloy v Meier (Minn 2004).
34. J. Audrain, B. Rimer, D. Cella, J. Garber, B.N. Peshkin, J. Ellis, et al. Genetic counseling and testing for breast-ovarian cancer susceptibility: what do women want? J Clin Oncol 1998; 16(1): 133-138.
35. K. Offit, E. Groeger, S. Turner, E.A. Wadsworth & M.A. Weiser. The 'duty to warn' a patient's family members about hereditary disease risks. JAMA 2004; 292(12): 1469-1473.
36. M. Otlowski. Australian reforms enabling disclosure of genetic information to genetic relatives by health practitioners. J Law Med 2013; 21(1): 217-234.
37. J.V. Pasacreta. Psychosocial issues associated with genetic testing for breast and ovarian cancer risk: an integrative review. Cancer Invest 2003; 21(4): 588-623.
38. J.E. Maher, J. Peterson, K. Hastings, L.L. Dahlberg, B. Seals, G. Shelley, et al. Partner violence, partner notification, and women's decisions to have an HIV test. J Acquir Immune Defic Syndr 2000; 25(3): 276-282; M. Temmerman, J. Ndinya-Achola & P. Piot. The right not to know HIV-test results. Lancet 1995; 345(8955): 969-970.
39. M. Temmerman, J. Ndinya-Achola & P. Piot. The right not to know HIV-test results. Lancet 1995; 345(8955): 969-970
40. C. Gilligan. A Different Voice. Cambridge, MA: Harvard University Press; 1982.
41. C. Gilligan. Moral Orientation and Moral Development. In The Feminist Philosophy Reader. Boston, MA: McGraw-Hill; 2008.
42. United Nations Educational Scientific and Cultural Organization (UNESCO). International Declaration on Human Genetic Data. Geneva: UNESCO; 2003.
43. N. Noddings. Caring: A Feminine Approach to Ethics and Moral Education. Berkeley, CA: University of California Press; 2003.
44. A.M. O'Connor, M.J. Jacobsen & D. Stacey. An evidence-based approach to managing women's decisional conflict. Journal of Obstetric, Gynecologic, and Neonatal Nursing 2002; 31(5): 570-581.
45. N. Noddings. Caring: A Feminine Approach to Ethics and Moral Education. Berkeley, CA: University of California Press; 2003.
46. K.L. Hudson. Prohibiting genetic discrimination. N Engl J Med 2007; 356(20): 2021-2023.
47. J.T. Wilcke. Late onset genetic disease: where ignorance is bliss, is it folly to inform relatives? BMJ 1998; 317(7160): 744-747.
48. B.N. Peshkin, T.A. Demarco & K.P. Tercyak. On the development of a decision support intervention for mothers undergoing BRCA1/2 cancer genetic testing regarding communicating test results to their children. Familial Cancer 2010; 9(1): 89-97.
49. K.P. Tercyak, B.N. Peshkin, T.A. Demarco, A.F. Patenaude, K.A. Schneider, J.E. Garber, et al. Information needs of mothers regarding communicating BRCA1/2 cancer genetic test results to their children. Genet Test 2007; 11(3): 249-255.
50. L.S. Di Prospero, M. Seminsky, J. Honeyford, B. Doan, E. Franssen, W. Meschino, et al. Psychosocial issues following a positive result of genetic testing for BRCA1 and BRCA2 mutations: findings from a focus group and a needs-assessment survey. CMAJ 2001; 164(7): 1005- 1009.