Parental preferences for CDKN2A/p16 testing of minors

Genetics in Medicine

Volumn 12, Issue 12, 2010, Pages 823-838

  Taber, Jennifer M ^a   Aspinwall, Lisa G ^a   Kohlmann, Wendy ^b   Dow, Reed ^a   Leachman, Sancy A ^b,c  

^a UNIVERSITY OF UTAH   (United States)

^b UNIVERSITY OF UTAH   (United States)

^c UNIVERSITY OF UTAH SCHOOL OF MEDICINE   (United States)

Author keywords

CDKN2A; children; familial melanoma; genetic counseling; prevention

Indexed keywords

CYCLIN DEPENDENT KINASE 2; CYCLIN DEPENDENT KINASE 2A; PROTEIN P16; UNCLASSIFIED DRUG;

ADULT; ARTICLE; CANCER RISK; CHILD HEALTH CARE; DECISION MAKING; DISTRESS SYNDROME; FAMILIAL CANCER; FAMILY HISTORY; FEMALE; GENE MUTATION; GENETIC COUNSELING; GENETIC SERVICE; HUMAN; MAJOR CLINICAL STUDY; MALE; MELANOMA; ONSET AGE; PARENT; PSYCHOLOGICAL ASPECT; RISK REDUCTION; SUN EXPOSURE;

ADULT; AGE OF ONSET; AGED; AGED, 80 AND OVER; CYCLIN-DEPENDENT KINASE INHIBITOR P16; FEMALE; FOLLOW-UP STUDIES; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HETEROZYGOTE; HUMANS; MALE; MELANOMA; MIDDLE AGED; MINORS; PARENTAL CONSENT; PATIENT PREFERENCE; SKIN NEOPLASMS; YOUNG ADULT;

EID: 78650677274     PISSN: 10983600     EISSN: None     Source Type: Journal    
DOI: 10.1097/GIM.0b013e3181f87278     Document Type: Article

References (55)

1. Menko FH, Vasen HF, Lynch HT, editors. Genetic testing in childhood. Fam Cancer 2010;9:1-97.
2. Borry P, Stultiens L, Nys H, Cassiman JJ, Dierickx K. Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers. Clin Genet 2006;70:374-381.
3. Bishop DT, Demenais F, Goldstein AM, et al. Geographical variation in the penetrance of CDKN2A mutations for melanoma. J Natl Cancer Inst 2002; 94:894-903.
4. Begg CB, Orlow I, Hummer AJ, et al. Lifetime risk of melanoma in CDKN2A mutation carriers in a population-based sample. J Natl Cancer Inst 2005;97:1507-1515.
5. Leachman SA, Carucci J, Kohlmann W, et al. Selection criteria for genetic assessment of patients with familial melanoma. J Am Acad Dermatol 2009; 61:677.e1- 677.e14.
6. GenoMEL the Melanoma Genetics Consortium. Genetic counselling and testing for hereditary melanoma. Available at: http://www.genomel.org/ genetic-counselling/. Updated July 2010. Accessed July 28, 2010.
7. American Society of Human Genetics Board of Directors, American College of Medical Genetics Board of Directors. Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. Am J Hum Genet 1995;57:1233-1241.
8. Borry P, Goffin T, Nys H, Dierickx K. Attitudes regarding predictive genetic testing in minors: a survey of European clinical geneticists. Am J Med Genet C Semin Med Genet 2008;148C:78-83.
9. Brandi ML, Gagel RF, Angeli A, et al. Guidelines for diagnosis and therapy of MEN type 1 and type 2. J Clin Endocrinol Metab 2001;86:5658-5671.
10. Burke W, Daly M, Garber J, et al. Recommendations for follow-up care of individuals with an inherited predisposition to cancer. II. BRCA1 and BRCA2. Cancer Genetics Studies Consortium. JAMA 1997;277:997-1003. (Pubitemid 27142370)
11. Whiteman DC, Whiteman CA, Green AC. Childhood sun exposure as a risk factor for melanoma: a systematic review of epidemiologic studies. Cancer Causes Control 2001;12:69-82.
12. Davis KJ, Cokkinides VE, Weinstock MA, O'Connell MC, Wingo PA. Summer sunburn and sun exposure among US youths ages 11 to 18: national prevalence and associated factors. Pediatrics 2002;110:27-35.
13. Cokkinides V, Weinstock M, Lazovich D, Ward E, Thun M. Indoor tanning use among adolescents in the US, 1998 to 2004. Cancer 2009;115:190-198.
14. Cokkinides V, Weinstock M, Glanz K, Albano J, Ward E, Thun M. Trends in sunburns, sun protection practices, and attitudes toward sun exposure protection and tanning among US adolescents, 1998 -2004. Pediatrics 2006; 118:853-864.
15. Geller AC, Colditz G, Oliveria S, et al. Use of sunscreen, sunburning rates, and tanning bed use among more than 10 000 US children and adolescents. Pediatrics 2002;109:1009-1014.
16. Berwick M, Armstrong BK, Ben-Porat L, et al. Sun exposure and mortality from melanoma. J Natl Cancer Inst 2005;97:195-199.
17. Siskind V, Aitken J, Green A, Martin N. Sun exposure and interaction with family history in risk of melanoma, Queensland, Australia. Int J Cancer 2002;97:90-95.
18. Pho L, Grossman D, Leachman SA. Melanoma genetics: a review of genetic factors and clinical phenotypes in familial melanoma. Curr Opin Oncol 2006;18:173-179.
19. Bishop JN, Harland M, Randerson-Moor J, Bishop DT. Management of familial melanoma. Lancet Oncol 2007;8:46-54.
20. Altekruse SF, Kosary CL, Krapcho M, et al, editors. 1975-2007. SEER Cancer Statistics Review, 1975-2007. Bethesda, MD: National Cancer Institute, 2010. Available at: http://seer.cancer.gov/csr/1975-2007/, based on November 2009 SEER data submission, posted to the SEER web site, 2010. Accessed September 19, 2010.
21. Hansen CB, Wadge LM, Lowstuter K, Boucher K, Leachman SA. Clinical germline genetic testing for melanoma. Lancet Oncol 2004;5:314-319.
22. Kefford RF, Mann GJ. Is there a role for genetic testing in patients with melanoma? Curr Opin Oncol 2003;15:157-161.
23. Gerstenblith MR, Goldstein AM, Tucker MA, Fraser MC. Genetic testing for melanoma predisposition: current challenges. Cancer Nurs 2007;30:452-459.
24. Kasparian NA, Meiser B, Butow PN, Simpson JM, Mann GJ. Genetic testing for melanoma risk: a prospective cohort study of uptake and outcomes among Australian families. Genet Med 2009;11:265-278.
25. Leachman SA, Taber JM, Leaf S, Aspinwall LG. Melanoma genetic counseling and testing improve patient compliance and perceived control. Paper presented at 3rd World Meeting of Interdisciplinary Melanoma/Skin Cancer Centers. Berlin, November 19-21, 2009.
26. Aspinwall LG, Leaf SL, Dola ER, Kohlmann W, Leachman SA. CDKN2A/ p16 genetic test reporting improves early detection intentions and practices in high-risk melanoma families. Cancer Epidemiol Biomarkers Prev 2008; 17:1510-1519.
27. Aspinwall LG, Leaf SL, Kohlmann W, Dola ER, Leachman SA. Patterns of photoprotection following CDKN2A/p16 genetic test reporting and counseling. J Am Acad Dermatol 2009;60:745-757.
28. Duncan RE, Gillam L, Savulescu J, Williamson R, Rogers JG, Delatycki MB. "You're one of us now": young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adeno-matous polyposis (FAP). Am J Med Genet C Semin Med Genet 2008;148C: 47-55.
29. Peshkin BN, DeMarco TA, Garber JE, et al. Brief assessment of parents' attitudes toward testing minor children for hereditary breast/ovarian cancer genes: development and validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS). J Pediatr Psychol 2009;34:627-638.
30. Robertson S, Savulescu J. Is there a case in favour of predictive genetic testing in young children? Bioethics 2001;15:26-49.
31. Geller AC, Brooks DR, Colditz GA, Koh HK, Frazier AL. Sun protection practices among offspring of women with personal or family history of skin cancer. Pediatrics 2006;117:e688-e694.
32. Michie S, Marteau TM. Predictive genetic testing in children: the need for psychological research. Br J Health Psychol 1996;1:3-14.
33. Marteau TM, Weinman J. Self-regulation and the behavioural response to DNA risk information: a theoretical analysis and framework for future research. Soc Sci Med 2006;62:1360-1368.
34. Wertz DC, Fanos JH, Reilly PR. Genetic testing for children and adolescents. Who decides? JAMA 1994;272:875-881.
35. Malpas PJ. Predictive genetic testing of children for adult-onset diseases and psychological harm. J Med Ethics 2008;34:275-278.
36. Codori AM, Zawacki KL, Petersen GM, et al. Genetic testing for hereditary colorectal cancer in children: long-term psychological effects. Am J Med Genet A 2003;116A:117-128.
37. Michie S, Bobrow M, Marteau TM. Predictive genetic testing in children and adults: a study of emotional impact. J Med Genet 2001;38:519-526.
38. Duncan RE, Delatycki MB. Predictive genetic testing in young people for adult-onset conditions: where is the empirical evidence? Clin Genet 2006; 69:8-16.
39. Kuther TL. Medical decision-making and minors: issues of consent and assent. Adolescence 2003;38:343-358.
40. Esplen MJ, Madlensky L, Aronson M, et al. Colorectal cancer survivors undergoing genetic testing for hereditary non-polyposis colorectal cancer: motivational factors and psychosocial functioning. Clin Genet 2007;72:394-401.
41. Braithwaite D, Sutton S, Steggles N. Intention to participate in predictive genetic testing for hereditary cancer: the role of attitude toward uncertainty. Psychol Health 2002;17:761-772.
42. Kasparian NA, Meiser B, Butow PN, Job RF, Mann GJ. Better the devil you know? High-risk individuals' anticipated psychological responses to genetic testing for melanoma susceptibility. J Genet Couns 2006;15:433-447.
43. Melton GB. Children's competence to consent: a problem in law and social science. In: Melton GB, Saks MJ, editors. Children's competence to consent. New York: Plenum Press, 1983:1-20.
44. Kamb A, Shattuck-Eidens D, Eeles R, et al. Analysis of the p16 gene (CDKN2) as a candidate for the chromosome 9p melanoma susceptibility locus. Nat Genet 1994;8:23-26.
45. Cannon-Albright LA, Goldgar DE, Meyer LJ, et al. Assignment of a locus for familial melanoma, MLM, to chromosome 9p13-p22. Science 1992;258: 1148-1152.
46. Bergenmar M, Brandberg Y. Sunbathing and sun-protection behaviors and attitudes of young Swedish adults with hereditary risk for malignant melanoma. Cancer Nurs 2001;24:341-350.
47. Azzarello LM, Dessureault S, Jacobsen PB. Sun-protective behavior among individuals with a family history of melanoma. Cancer Epidemiol Biomar-kers Prev 2006;15:142-145.
48. Coyne JC, Gottlieb BH. The mismeasure of coping by checklist. J Pers 1996;64:959-991.
49. Hamann HA, Croyle RT, Venne VL, Baty BJ, Smith KR, Botkin JR. Attitudes toward the genetic testing of children among adults in a Utah-based kindred tested for a BRCA1 mutation. Am J Med Genet 2000;92:25-32.
50. Bradbury AR, Patrick-Miller L, Pawlowski K, et al. Should genetic testing for BRCA1/2 be permitted for minors? Opinions of BRCA mutation carriers and their adult offspring. Am J Med Genet C Semin Med Genet., 2008;148C, 70-77.
51. Fenwick A. Are guidelines for genetic testing of children necessary? Fam Cancer 2010;9:23-25.
52. Duncan RE, Gillam L, Savulescu J, Williamson R, Rogers JG, Delatycki MB. The challenge of developmentally appropriate care: predictive genetic testing in young people for familial adenomatous polyposis. Fam Cancer 2010;9:27-35.
53. Leaf SL, Aspinwall LG, Leachman SA. God and agency in the era of molecular medicine: religious beliefs predict sun-protection behaviors following melanoma genetic test reporting. Arch Psychol Religion 2010;32:87-112.
54. Kinney AY, Emery G, Dudley WN, Croyle RT. Screening behaviors among African American women at high risk for breast cancer: do beliefs about god matter? Oncol Nurs Forum 2002;29:835-843.
55. Cella D, Hughes C, Peterman A, et al. A brief assessment of concerns associated with genetic testing for cancer: the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire. Health Psychol 2002;21:564-572.