Generation after generation: Exploring the psychological impact of providing genetic services through a cascading approach

Genetics in Medicine

Volumn 12, Issue 12, 2010, Pages 808-815

  Hadley, Donald W ^a,d   Ashida, Sato ^a   Jenkins, Jean F ^b   Martin, Jean C ^a   Calzone, Kathleen A ^c   Kuhn, Natalia R ^a   McBride, Colleen M ^a   Kirsch, Ilan R ^c   Koehly, Laura M ^a  

^a NATIONAL HUMAN GENOME RESEARCH INSTITUTE   (United States)

^b JO EF STEFAN INSTITUTE   (Slovenia)

^c NATIONAL CANCER INSTITUTE   (United States)

^d DHHS   (United States)

Author keywords

cascade genetic testing; genetic services; genetic test related distress and worry; HNPCC Lynch syndrome; social influence

Indexed keywords

ADULT; AGED; ANXIETY; ARTICLE; CENTER FOR EPIDEMIOLOGICAL STUDIES DEPRESSION SCALE; COLORECTAL CANCER; DEPRESSION; DISTRESS SYNDROME; FAMILIAL DISEASE; FAMILY COUNSELING; FEMALE; GENETIC COUNSELING; GENETIC SERVICE; HEALTH SERVICE; HEREDITARY NONPOLYPOSIS COLORECTAL CANCER; HUMAN; MAJOR CLINICAL STUDY; MALE; QUESTIONNAIRE; RISK ASSESSMENT; SOCIAL ASPECT;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; COLORECTAL NEOPLASMS, HEREDITARY NONPOLYPOSIS; DEPRESSION; FAMILY; FAMILY CHARACTERISTICS; FEMALE; GENETIC SERVICES; HUMANS; MALE; MIDDLE AGED; MUTATION; STRESS, PSYCHOLOGICAL; YOUNG ADULT;

EID: 78650679049     PISSN: 10983600     EISSN: None     Source Type: Journal    
DOI: 10.1097/GIM.0b013e3181f69dbb     Document Type: Article

References (33)

1. de Snoo FA, Riedijk SR, van Mil AM, et al. Genetic testing in familial melanoma: uptake and implications. Psychooncology 2008;17:790-796.
2. Christiaans I, Birnie E, Bonsel GJ, Wilde AA, van Langen IM. Uptake of genetic counselling and predictive DNA testing in hypertrophic cardiomy-opathy. Eur J Hum Genet 2008;16:1201-1207.
3. Finlay E, Stopfer JE, Burlingame E, et al. Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genet Test 2008;12:81-91.
4. Hadley DW, Jenkins J, Dimond E, et al. Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer. Arch Intern Med 2003;163:573-582.
5. Lerman C, Hughes C, Trock BJ, et al. Genetic testing in families with hereditary nonpolyposis colon cancer. JAMA 1999;281:1618-1622.
6. Marsden PV, Friedkin NE. Network Studies of Social Influence. Sociological Methods & Research 1993;22:127-151.
7. Gaff CL, Clarke AJ, Atkinson P, et al. Process and outcome in communication of genetic information within families: a systematic review. Eur J Hum Genet 2007;15:999-1011.
8. Meiser B. Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psychooncology 2005;14:1060-1074.
9. Schwartz MD, Taylor KL, Willard KS. Prospective association between distress and mammography utilization among women with a family history of breast cancer. J Behav Med 2003;26:105-117.
10. Lerman C, Kash K, Stefanek M. Younger women at increased risk for breast cancer: perceived risk, psychological well-being, and surveillance behavior. J Natl Cancer Inst Monogr 1994;(16):171-176.
11. Koehly LM, Peters JA, Kuhn N, et al. Sisters in hereditary breast and ovarian cancer families: communal coping, social integration, and psychological well-being. Psychooncology 2008;17:812-821.
12. Smith KR, West JA, Croyle RT, Botkin JR. Familial context of genetic testing for cancer susceptibility: moderating effect of siblings' test results on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiol Biomarkers Prev 1999;8:385-392.
13. Hamann HA, Smith TW, Smith KR, et al. Interpersonal responses among sibling dyads tested for BRCA1/BRCA2 gene mutations. Health Psychol 2008;27:100-109.
14. Meissen GJ, Myers RH, Mastromauro CA, et al. Predictive testing for Huntington's disease with use of a linked DNA marker. N Engl J Med 1988;318:535-542.
15. Ashida S, Hadley DW, Vaughn BK, Kuhn NR, Jenkins JF, Koehly LM. The impact of familial environment on depression scores after genetic testing for cancer susceptibility. Clin Genet 2009;75:43-49.
16. Rolland JS, Williams JK. Toward a biopsychosocial model for 21st-century genetics. Fam Process 2005;44:3-24.
17. Pescosolido BA. Beyond rational choice: the social dynamics of how people seek help. Am J Soc 1992;97:1096-1138.
18. Lynch HT, Lynch PM, Lanspa SJ, Snyder CL, Lynch JF, Boland CR. Review of the Lynch syndrome: history, molecular genetics, screening, differential diagnosis and medicolegal ramifications. Clin Genet 2009;76:1-18.
19. Hampel H, Stephens JA, Pukkala E, et al. Cancer risk in hereditary nonpol-yposis colorectal cancer syndrome: later age of onset. Gastroenterology 2005;129:415-421.
20. Jarvinen HJ, Aarnio M, Mustonen H, et al. Controlled 15-year trial on screening for colorectal cancer in families with hereditary nonpolyposis colorectal cancer. Gastroenterology 2000;118:829-834.
21. Lindor NM, Petersen GM, Hadley DW, et al. Recommendations for the care of individuals with an inherited predisposition to Lynch syndrome: a systematic review. JAMA 2006;296:1507-1517.
22. Radloff LS. The CES-D scale: a self-report depression scale for research in the general population. Appl Psychol Meas 1977;1:385-401.
23. Gritz ER, Peterson SK, Vernon SW, et al. Psychological impact of genetic testing for hereditary nonpolyposis colorectal cancer. J Clin Oncol 2005;23: 1902-1910.
24. Claes E, Denayer L, Evers-Kiebooms G, et al. Predictive testing for hereditary nonpolyposis colorectal cancer: subjective perception regarding colo-rectal and endometrial cancer, distress, and health-related behavior at one year post-test. Genet Test 2005;9:54-65.
25. Horowitz M, Wilner N, Alvarez W. Impact of Event Scale: a measure of subjective stress. Psychosom Med 1979;41:209-218.
26. SPSS Inc [computer program]. SPSS for Windows, Rel 15.0.1. Version 15. Chicago, IL: SPSS Inc., 2006.
27. Wickman ME, Anderson NL, Greenberg CS. The adolescent perception of invincibilty and its influence on teen acceptance of health promotion strategies. J Pediatr Nurs 2008;23:460-468.
28. Wagner Costalas J, Itzen M, Malick J, et al. Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program's experience. Am J Med Genet C Semin Med Genet 2003;119C: 11-18.
29. Lynch HT. Family information service and hereditary cancer. Cancer 2001; 91:625-628.
30. Blandy C, Chabal F, Stoppa-Lyonnet D, Julian-Reynier C. Testing participation in BRCA1/2-positive families: initiator role of index cases. Genet Test 2003;7:225-233.
31. d'Agincourt-Canning L. Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics 2001;15:231-247.
32. Bonadona V, Saltel P, Desseigne F, et al. Cancer patients who experienced diagnostic genetic testing for cancer susceptibility: reactions and behavior after the disclosure of a positive test result. Cancer Epidemiol Biomarkers Prev 2002;11:97-104.
33. Loud JT, Weissman NE, Peters JA, et al. Deliberate deceit of family members: a challenge to providers of clinical genetics services. J Clin Oncol 2006;24:1643-1646.