Genetic health professionals and the communication of genetic information in families: Practice during and after a genetic consultation

American Journal of Medical Genetics, Part A

Volumn 152, Issue 6, 2010, Pages 1458-1466

  Forrest, Laura E ^a,b   Delatycki, Martin B ^a,b   Curnow, Lisette ^a   Skene, Loane ^c   Aitken, Maryanne ^a,b  

^a ROYAL CHILDREN'S HOSPITAL   (Australia)

^b UNIVERSITY OF MELBOURNE   (Australia)

^c UNIVERSITY OF MELBOURNE   (Australia)

Author keywords

At risk relatives; Family communication; Genetic counseling; Genetic practice

Indexed keywords

ARTICLE; CLINICAL PRACTICE; CONSULTATION; FOLLOW UP; GENETIC COUNSELING; GENETIC DISORDER; HEALTH PRACTITIONER; HUMAN; INTERPERSONAL COMMUNICATION; MEDICAL INFORMATION; PRIORITY JOURNAL; RISK ASSESSMENT;

AUSTRALIA; DATA COLLECTION; DISCLOSURE; FEMALE; GENETIC COUNSELING; GENETIC DISEASES, INBORN; HUMANS; MALE; PRACTICE GUIDELINES AS TOPIC; PROFESSIONAL-FAMILY RELATIONS;

EID: 77952746890     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/ajmg.a.33385     Document Type: Article

References (21)

1. Clarke A, Richards M, Kerzin-Storrar L, Halliday J, Young MA, Simpson SA, Featherstone K, Forrest K, Lucassen A, Morrison PJ, Quarrell OWJ, Stewart H. 2005. Genetic professionals' reports of nondisclosure of genetic risk information within families. Eur J Hum Genet 13:556-562. (Pubitemid 40691395)
2. Dugan RB, Wiesner GL, Juengst ET, O'Riordan M, Matthews AL, Robin NH. 2003. Duty to warn at-risk relatives for genetic disease: Genetic counselors' clinical experience. Am J Med Genet Part C 119C:27-34. (Pubitemid 37064098)
3. Falk MJ, Dugan RB, O'Riordan MA, Matthews AL, Robin NH. 2003. Medical geneticists' duty to warn at-risk relatives for genetic disease. Am J Med Genet Part A 120A:374-380.
4. Forrest K, Simpson SA, Wilson BJ, van Teijlingen ER, McKee L, Haites N, Matthews E. 2003. To tell or not to tell: Barriers and facilitators in family communication about genetic risk. Clin Genet 64:317-326. (Pubitemid 37236132)
5. Forrest LE, Delatycki MB, Skene L, Aitken M. 2007. Communicating genetic information in families - A review of guidelines and position papers. Eur J Hum Genet 15:612-618. (Pubitemid 46825050)
6. Forrest LE, Burke J, Bacic S, Amor DJ. 2008a. Increased genetic counseling support improves communication of genetic information in families. Genet Med 10:167-172. (Pubitemid 351416812)
7. Forrest LE, Curnow L, Delatycki MB, Skene L, Aitken MA. 2008b. Health first, genetics second: Exploring families' experiences of communicating genetic information. Eur J Hum Genet 16:1329-1335.
8. Gaff C, Hodgson J. 2009. Enhancing family communication about genetics: Development of a counselling intervention. Twin Res Hum Genet 12: 217.
9. Gaff CL, Clarke AJ, Atkinson P, Sivell S, Elwyn G, Iredale R, Thornton H, Dundon J, Shaw C, Edwards A. 2007. Process and outcome in communication of genetic information within families: A systematic review. Eur J Hum Genet 15:999-1011. (Pubitemid 47491454)
10. Green B, Jones M, Hughes D, Williams Hughes D. 1999. Applying the Delphi technique in a study of GPs' information requirements. Health Soc Care Community 7:198-205.
11. Hallowell N. 1998. Providing letters to patients - Patients find summary letters useful. Br Med J 316:1830-1830 (Pubitemid 28269176)
12. Hallowell N, Murton F. 1998. The value of written summaries of genetic consultations. Patient Educ Couns 35:27-34. (Pubitemid 29037811)
13. Jones J, Hunter D. 1995. Qualitative research: Consensus methods for medical and health services research. Br Med J 311:376-380.
14. Kerzin-Storrar L, Wright C, Williamson PR, Fryer A, Njindou A, Quarrell O, Donnai D, Craufurd D. 2002. Comparison of genetic services with and without genetic registers: Access and attitudes to genetic counselling services among relatives of genetic clinic patients. J Med Genet 39:e85.
15. McConkie-Rosell A, Finucane B, Cronister A, Abrams L, Bennett RL, Petterson BJ. 2005. Genetic counseling for fragile X syndrome: Updated recommendations of the National Society of Genetic Counselors. J Genet Counsel 14:249-270. (Pubitemid 41095420)
16. Pate v. Threlkel. 1995. Wests South Report: Florida. Supreme Court. pp 278-282.
17. Resta R, Biesecker BB, Bennett RL, Blum S, Estabrooka Hahn S, Strecker MN, Williams JL. 2006. A new definition of genetic counseling: National Society of Genetic Counsellors' task force report. J Genet Counsel 15: 77-83. (Pubitemid 43876101)
18. Safer v. Estate of Pack. 1996. Atl Report: New Jersey. Superior Court, Appellate Division. pp 1188-1193.
19. Skene L, Forrest LE. 2010. Legal perspectives of family communication. In: Gaff CL, Bylund CL, editors. Family communication about genetics: Theory and practice. New York: Oxford University Press, Inc.
20. Suthers GK, Armstrong J, McCormack J, Trott D. 2006. Letting the family know: Balancing ethics and effectiveness when notifying relatives about genetic testing for a familial disorder. J Med Genet 43:665-670. (Pubitemid 44214904)
21. Wright C, Kerzin-Storrar L, Williamson PR, Fryer A, Njindou A, Quarrell O, Donnai D, Craufurd D. 2002. Comparison of genetic services with and without genetic registers: Knowledge, adjustment, and attitudes about genetic counselling among probands referred to three genetic clinics. J Med Genet 39:e84.