Should healthcare providers have a duty to warn family members of individuals with an HNPCC-causing mutation? A survey of patients from the Ontario Familial Colon Cancer Registry

Journal of Medical Genetics

Volumn 44, Issue 6, 2007, Pages 404-407

  Kohut, Kelly ^a,b   Manno, Michael ^a   Gallinger, Steven ^a   Esplen, Mary Jane ^a  

^a CANCER CARE ONTARIO   (Canada)

^b MEMORIAL SLOAN KETTERING CANCER CENTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; CANCER REGISTRY; CANCER RISK; CANCER SCREENING; COLORECTAL CANCER; CONTENT ANALYSIS; CONTROLLED STUDY; FAMILY COUNSELING; GENE MUTATION; GENETIC ANALYSIS; GENETIC COUNSELING; HEALTH CARE PERSONNEL; HEALTH SURVEY; HUMAN; MAJOR CLINICAL STUDY; PATIENT ATTITUDE; PRIORITY JOURNAL;

ADULT; AGED; COLORECTAL NEOPLASMS, HEREDITARY NONPOLYPOSIS; DUTY TO WARN; ETHICS, MEDICAL; FAMILY; HEALTH PERSONNEL; HEALTH SURVEYS; HUMANS; MIDDLE AGED; MUTATION; ONTARIO; REGISTRIES;

EID: 34250750776     PISSN: 00222593     EISSN: None     Source Type: Journal    
DOI: 10.1136/jmg.2006.047357     Document Type: Article

References (30)

1. Bell D, Bennett B. Genetic secrets and the family. Med Law Rev 2001;9:130-61.
2. Sankar P. Genetic privacy. Annu Rev Med 2003;54:393-407.
3. American Society of Clinical Oncology. Policy statement update: genetic testing for cancer susceptibility. J Clin Oncol 2003;21:1-10.
4. American Society of Human Genetics Social Issues Subcommitee on Familial Disclosure. ASHG statement: professional disclosure of familial genetic information. Am J Hum Genet 1998;62:474-83.
5. Seiden SC, Morin K. Council on Ethical and Judicial Affairs, American Medical Association. J Law Ethics 2002;30:88-94.
6. Pate v Threkel. FL recognizes duty to warn patient of transmissibility of genetic disease to child. Supreme Court of Florida 1995;661 So.2d 278.
7. Safer v Estate of Pack. NJ allows malpractice claim for not warning child of parent's genetic predisposition to cancer. New Jersey Superior Court, Appellate Division, 1996;677 A.2d, 1188.
8. Annas GJ. The limits of state laws to protect genetic information. New Engl J Med 2001;345:385-9.
9. Plantinga L, Natowicz MR, Kass NE, Chandros Hull S, Gostin LO, Faden RR. Disclosure, confidentiality, and families: experiences and attitudes of those with genetic versus nongenetic medical conditions. Am J Med Genet 2003;119C:51-9.
10. HIPAA Privacy Regulations. 65 Fed Reg (December 28, 2000), and 67 Fed Reg (August 14, 2002).
11. Offit K, Groeger E, Turner S, Wadsworth EA, Weiser MA. The "duty to warn" a patient's family members about hereditary disease risks. JAMA 2004;292:1469-73.
12. Cotterchio M, McKeown-Eyssen G, Sutherland H, Buchan G, Aronson M, Easson EM, Macey J, Holowaty J, Gallinger S. Ontario Familial Colon Cancer Registry: methods and first-year response rates. Chronic Dis Cancer 2000;21:81-6.
13. Hadley DW, Jenkins J, Diamond E, Nakahara K, Grogan L, Liewehr DJ, Steinberg SM, Kirsch I. Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer. Arch Intern Med 2003;163:573-82.
14. Esplen MJ, Madlensky L, Aronson M, Rothenmund H, Butler K, Laceby J, Toner B, McLaughlin J, Manno M, Wong J. Psychosocial functioning in colorectal cancer survivors participating in a Colon Cancer Family Registry. Clin Genet. In press.
15. Clarke S, Esplen MJ, Butler K. Experiences and patterns of dissemination of genetic information to family members in women with BRCA1 and BRCA2 mutations. Genet Test. In press.
16. Madlensky L, Esplen MJ, Gallinger S, McLaughlin JR, Goel V. Relatives of colorectal cancer patients: factors associated with screening behavior. Am J Prev Med 2003;25:187-94.
17. Suthers GK, Armstrong J, McCormack J, Trott D. Letting the family know: balancing ethics and effectiveness when notifying relatives about genetic testing for a familial disorder. J Med Genet 2005;43:665-70.
18. Falk MJ, Dugan B, O'Riordan M, Matthews AL, Robin NH. Medical geneticists' duty to warn at risk relatives for genetic disease. Am J Med Genet 2003;120:374-80.
19. Dugan RB, Wiesner GL, Juengst ET, O'Riordan M, Matthews AL, Robin NH. Duty to warn at-risk relatives for genetic disease: genetic counselors' clinical experience. Am J Med Genet 2003;119C:27-34.
20. Knoppers BM. Genetic information and the family: are we our brother's keeper? Trends Biotechnol 2002;20:85-6.
21. Doukas DJ, Berg JW. The family covenant and genetic testing. Am J Bioethics 2001;1:2-10.
22. Lerman C, Marshall J, Audrain J, Gomez-Caminero A. Genetic testing for colon cancer susceptibility: anticipated reactions of patients and challenges to providers. Int J Cancer 1996;69:58-61.
23. Geer KP, Ropka ME, Cohn WF, Jones SM, Miesfeldt S. Factors influencing decisions to decline cancer genetic counseling services. J Genet Couns 2001;10:25-40.
24. Clayton EW. What should the law say about disclosure of genetic information to relatives? J Health Care Law Policy 1998;1:373-90.
25. McAbee GN, Sherman J. Physician's duty to warn third parties about the risk of genetic diseases. Pediatrics 1998;102:52-63.
26. Aktan-Collan K, Haukkala A, Mecklin J-P, Uutela A, Kaariainen H. Psychological consequences of predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a prospective follow-up study. Int J Cancer 2001;93:608-11.
27. Peterson SK, Watts BG, Koehly LM, Vernon SW, Baile WF, Kohlmann WK, Gritz ER. How families communicate about HNPCC genetic testing: findings from a qualitative study. Am J Med Genet 2003;119C:78-86.
28. Tercyak KP, Peshkin BN, DeMarco TA, Brogan BM, Lerman C. Parent-child factors and their effect on communicating BRCA 1/2 test results to children. Patient Educ Couns 2002;47:145-53.
29. Hughes C, Lerman C, Schwartz M, Peshkin BN, Wenzel L, Narod S, Corio C, Tercyak KP, Hanna D, Issaacs C, Main D. All in the family: evaluation of the process and content of sisters' communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet 2002;107:143-50.
30. Keller M, Jost R, Hauntstetter CM, Kienle P, Knaebel HP, Gebert J, Sutter C, Knebel-Doeberitz M, Cremer F, Mazitchek U. Comprehensive genetic counseling for families at risk for HNPCC: impact on distress and perceptions, Genet Test 2002;6:291-302.