Population-based, risk-stratified genetic testing for ovarian cancer risk: A focus group study

Public Health Genomics

Volumn 16, Issue 4, 2013, Pages 184-191

  Meisel, S F ^a   Side, L ^b   Fraser, L ^b   Gessler, S ^b   Wardle, J ^a   Lanceley, A ^b  

^a UNIVERSITY COLLEGE LONDON   (United Kingdom)

^b UNIVERSITY COLLEGE LONDON HOSPITALS   (United Kingdom)

Author keywords

Focus groups; Implementation; Ovarian cancer; Predictive genetic testing; Risk; Stratification

Indexed keywords

ADULT; ANXIETY; ARTICLE; AWARENESS; CANCER PREVENTION; CANCER RISK; CANCER SCREENING; EARLY INTERVENTION; ENVIRONMENTAL FACTOR; FEMALE; GENETIC SCREENING; HEREDITY; HUMAN; LOW RISK POPULATION; MAJOR CLINICAL STUDY; OVARY CANCER; POPULATION RISK; PRIORITY JOURNAL; REASSURANCE; RECORDING;

EID: 84881554878     PISSN: 16624246     EISSN: 16628063     Source Type: Journal    
DOI: 10.1159/000352028     Document Type: Article

References (36)

1. Nossov V, Amneus M, Su F, Lang J, Janco JMT, Reddy ST, Farias-Eisner R: The early detection of ovarian cancer: from traditional methods to proteomics. Can we really do better than serum CA-125? Am J Obstet Gynecol 2008; 199: 215-223.
2. Slomski A: Screening women for ovarian cancer still does more harm than good. JAMA 2012; 307: 2474-2475.
3. Moorman PG: Genetic markers for ovarian cancer risk: are we close to seeing a clinical impact? Pers Med 2012; 9: 565-567.
4. Vaughan S, Coward JI, Bast RC, Berchuck A, Berek JS, Brenton JD, Coukos G, Crum CC, Drapkin R, Etemadmoghadam D, Friedlander M, Gabra H, Kaye SB, Lord CJ, Lengyel E, Levine DA, McNeish IA, Menon U, Mills GB, Nephew KP, Oza AM, Sood AK, Stronach EA, Walczak H, Bowtell DD, Balkwill FR: Rethinking ovarian cancer: recommendations for improving outcomes. Nat Rev Cancer 2011; 11: 719-725.
5. Menon U, Gentry-Maharaj A, Hallett R, Ryan A, Burnell M, Sharma A, Lewis S, Davies S, Philpott S, Lopes A, Godfrey K, Oram D, Herod J, Williamson K, Seif MW, Scott I, Mould T, Woolas R, Murdoch J, Dobbs S, Amso NN, Leeson S, Cruickshank D, Mc-Guire A, Campbell S, Fallowfield L, Singh N, Dawnay A, Skates SJ, Parmar M, Jacobs I: Sensitivity and specificity of multimodal and ultrasound screening for ovarian cancer, and stage distribution of detected cancers: results of the prevalence screen of the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS). Lancet Oncol 2009; 10: 327-340.
6. Rosenthal AN, Fraser L, Manchanda R, Badman P, Philpott S, Mozersky J, Hadwin R, Cafferty FH, Benjamin E, Singh N, Evans DG, Eccles DM, Skates SJ, Mackay J, Menon U, Jacobs IJ: Results of annual screening in phase I of the United Kingdom familial ovarian cancer screening study highlight the need for strict adherence to screening schedule. J Clin Oncol 2013; 31: 49-57.
7. Antoniou A, Pharoah PD, Narod S, Risch HA, Eyfjord JE, Hopper JL, Loman N, Olsson H, Johannsson O, Borg A, Pasini B, Radice P, Manoukian S, Eccles DM, Tang N, Olah E, Anton-Culver H, Warner E, Lubinski J, Gronwald J, Gorski B, Tulinius H, Thorlacius S, Eerola H, Nevanlinna H, Syrjäkoski K, Kallioniemi OP, Thompson D, Evans C, Peto J, Lalloo F, Evans DG, Easton DF: Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case series unselected for family history: a combined analysis of 22 studies. Am J Hum Gen 2003; 72: 1117-1130.
8. Ford D, Easton DF, Bishop DT, Narod SA, Goldgar DE: Risks of cancer in BRCA1-mutation carriers. Lancet 1994; 343: 692-695.
9. Evans DG, Shenton A, Woodward E, Lalloo F, Howell A, Maher E: Penetrance estimates for BRCA1 and BRCA2 based on genetic testing in a Clinical Cancer Genetics service setting: risks of breast/ovarian cancer quoted should reflect the cancer burden in the family. BMC Cancer 2008; 8: 155.
10. Gayther SA, Pharoah PD: The inherited genetics of ovarian and endometrial cancer. Curr Opin Genet Dev 2010; 20: 231-238.
11. Ropka ME, Wenzel J, Phillips EK, Siadaty M, Philbrick JT: Uptake rates for breast cancer genetic testing: a systematic review. Cancer Epidemiol Biomarkers Prev 2006; 15: 840-855.
12. Armstrong K, Calzone K, Stopfer J, Fitzgerald G, Coyne J, Weber B: Factors associated with decisions about clinical BRCA1/2 testing. Cancer Epidemiol Biomararkers Prev 2000; 9: 1251-1254.
13. Lee SC, Bernhardt BA, Helzlsouer KJ: Utilization of BRCA1/2 genetic testing in the clinical setting. Cancer 2002; 94: 1876-1885.
14. Lipkus IM, Iden D, Terrenoire J, Feaganes JR: Relationships among breast cancer concern, risk perceptions, and interest in genetic testing for breast cancer susceptibility among African-American women with and without a family history of breast cancer. Cancer Epidemiol Biomarmarkers Prev 1999; 8: 533-539.
15. Senior V, Marteau TM, Peters TJ: Will genetic testing for predisposition for disease result in fatalism? A qualitative study of parents responses to neonatal screening for familial hypercholesterolaemia. Soc Sci Med 1999; 48: 1857-1860.
16. Dent T, Jbilou J, Rafi I, Segnan N, Törnberg S, Chowdhury S, Hall A, Lyratzopoulos G, Eeles R, Eccles D, Hallowell N, Pashayan N, Pharoah P, Burton H: Stratified cancer screening: the practicalities of implementation. Public Health Genomics 2013; 16: 94-99.
17. Sivell S, Iredale R, Gray J, Coles B: Cancer genetic risk assessment for individuals at risk of familial breast cancer. Cochrane Database Syst Rev 2007;CD003721.
18. Dougall AL, Smith AW, Somers TJ, Posluszny DM, Rubinstein WS, Baum A: Coping with genetic testing for breast cancer susceptibility. Psychosom Med 2009; 71: 98-105.
19. Heshka JTM, Palleschi CM, Howley HM, Wilson BM, Wells PSMF: A systematic review of perceived risks, psychological and behavioral impacts of genetic testing. Genet Med 2008; 10: 19-32.
20. Manchanda R, Loggenberg K, Gessler S, Sanderson S, Balogun N, Wardle J, Tomlinson I, McGuire A, Beller U, Side L, Menon U, Jacobs I: Population based testing for highpenetrance dominant gene mutations: initial results from the pilot phase of GCaPPS. Int J Gynaecol Cancer 2012; 22:S42-S43.
21. Bloss CS, Schork NJ, Topol EJ: Effect of direct-to-consumer genomewide profiling to assess disease risk. N Engl J Med 2011; 364: 524-534.
22. Campbell M, Fitzpatrick R, Haines A, Kinmonth AL, Sandercock P, Spiegelhalter D, Tyrer P: Framework for design and evaluation of complex interventions to improve health. BMJ 2000; 321: 694-696.
23. Ritchie J, Lewis J: Qualitative Research Practice: A Guide for Social Science Students and Researchers. London, Sage Publications, 2003.
24. Meiser B, Butow P, Friedlander M, Barratt A, Schnieden V, Watson M, Brown J, Tucker K: Psychological impact of genetic testing in women from high-risk breast cancer families. Eur J Cancer 2002; 38: 2025-2031.
25. Watson M, Foster C, Eeles R, Eccles D, Ashley S, Davidson R, Mackay J, Morrison PJ, Hopwood P, Evans DG; Psychosocial Study Collaborators: Psychosocial impact of breast/ ovarian (BRCA1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort. Br J Cancer 2004; 91: 1787-1794.
26. Vallone RP, Griffin DW, Lin S, Ross L: Overconfident prediction of future actions and outcomes by self and others. J Pers Soc Psychol 1990; 58: 582-592.
27. Smerecnik CMR, Mesters I, de Vries NK, de Vries H: Educating the general public about multifactorial genetic disease: applying a theory-based framework to understand current public knowledge. Genet Med 2008; 10: 251-258.
28. Reyna VF: A theory of medical decision making and health: fuzzy trace theory. Med Decis Making 2008; 28: 850.
29. Anderson JR, Pirolli PL: Spread of activation. J Exp Psycol Learn 1984; 10: 791-799.
30. Parrott R, Silk K, Weiner J, Condit C, Harris T, Bernhardt J: Deriving lay models of uncertainty about genes' role in illness causation to guide communication about human genetics. J Commun 2004; 54: 105-122.
31. Henneman L, Timmermans DR, Bouwman CM, Cornel MC, Meijers-Heijboer H: 'A low risk is still a risk': exploring women's attitudes towards genetic testing for breast cancer susceptibility in order to target disease prevention. Public Health Genomics 2011; 14: 238-247.
32. Marteau TM, French DP, Griffin SJ, Prevost AT, Sutton S, Watkinson C, Attwood S, Hollands GJ: Effects of communicating DNAbased disease risk estimates on risk-reducing behaviours. Cochrane Database Syst Rev 2010;CD007275.
33. Barroso J, McMillan S, Casey L, Gibson W, Kaminski G, Meyer J: Comparison between African-American and white women in their beliefs about breast cancer and their health locus of control. Cancer Nurs 2000; 23.
34. Sanderson SC, O'Neill SC, Bastian LA, Bepler G, McBride CM: What can interest tell us about uptake of genetic testing? Intention and behavior amongst smokers related to patients with lung cancer. Public Health Genomics 2010; 13: 116-124.
35. Persky S, Kaphingst KA, Condit CM, Mc-Bride CM: Assessing hypothetical scenario methodology in genetic susceptibility testing analog studies: a quantitative review. Genet Med 2007; 9: 727-738.
36. Morgan DL: The Focus Group Guidebook. London, Sage Publications, 1997.