Patients' understanding of genetic susceptibility testing in mainstream medicine: Qualitative study on thrombophilia

BMC Health Services Research

Volumn 7, Issue , 2007, Pages

  Saukko, Paula M ^a   Ellard, Sian ^a   Richards, Suzanne H ^b   Shepherd, Maggie H ^b   Campbell, John L ^b  

^a UNIVERSITY OF EXETER   (United Kingdom)

^b PENINSULA MEDICAL SCHOOL   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; COMPREHENSION; CONFUSION; CONTROLLED STUDY; DEEP VEIN THROMBOSIS; FEMALE; GENETIC ASSOCIATION; GENETIC SUSCEPTIBILITY; GENETICS; HUMAN; INTERNET; INTERVIEW; MALE; MEDICAL INFORMATION; PRIMARY HEALTH CARE; PROPHYLAXIS; QUALITATIVE RESEARCH; RELATIVE; RISK FACTOR; SOCIAL CLASS; THROMBOPHILIA; UNITED KINGDOM; ATTITUDE TO HEALTH; GENETIC COUNSELING; GENETIC PREDISPOSITION; GENETIC SCREENING; PATIENT EDUCATION; PSYCHOLOGICAL ASPECT; VEIN THROMBOSIS;

BLOOD CLOTTING FACTOR 5; BLOOD CLOTTING FACTOR 5 LEIDEN;

FACTOR V; FEMALE; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC SCREENING; GREAT BRITAIN; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INTERVIEWS; MALE; PATIENT EDUCATION; THROMBOPHILIA; VENOUS THROMBOSIS;

EID: 34447101161     PISSN: None     EISSN: 14726963     Source Type: Journal    
DOI: 10.1186/1472-6963-7-82     Document Type: Article

References (49)

1. In the name of eugenics: Genetics and the uses of human heredity. D Kevles, Cambridge, MA, Harvard University Press 1995
2. Is non-directive counselling possible? A Clarke, Lancet 1991 335 1145 1147 10.1016/0140-6736(90)91139-2
3. Our inheritance, our future: Realising the potential of genetics in the NHS. Department of Health, London 2003
4. Inside information: Balancing interests in the use of personal genetic data. Human Genetics Commission, 2002
5. Can family history be used as a tool for public health and preventive medicine? P Yoon M Scheuner KL Peterson-Oehlke M Gwinn A Faucett M Khoury, Genetics in Medicine 2002 4 4 304 310 10.1097/00125817-200207000-00009 12172397
6. White Paper - Our health, our care, our say: a new direction for community services. Department of Health,, Department of Health, 2006
7. Creating Citizen-Consumers: New Labour and the Remaking of Public Services. Public Policy and Administration. E Vidler J Clarke, 2005 20 2 19 37
8. The expert patient: A new approach to chronic disease management for the 21st century. Department of Health, Department of Health 2001
9. The new genetics and the public's health. A Petersen R Bunton, London, Routledge 2002
10. Genetic risk and the birth of the somatic individual. C Novas N Rose, Economy and Society 2000 29 4 485 513 10.1080/03085140050174750
11. 'Ignorance is bliss sometimes': constrains on the emergence of the 'informed patient' in the changing landscapes of health information. F Henwood S Wyatt A Hart J Smith, Sociol Health Illn 2003 25 6 589 607 10.1111/1467-9566. 00360 12919447
12. What's in a name? New Labour's citizen-consumers and the remaking of public services. J Clarke J Newman, Culture and Social Change: Disciplinary Exchanges Manchester 2005
13. Health and information nonseeker: A profile. S Ramanadhan K Viswanath, Health Communication 2006 20 131 139 10.1207/s15327027hc2002_4 16965250
14. Cancer-related information seeking: Hints from the 2003 Health Information National Trends Survey (HINTS). L Rutten L Squiers B Hesse, Journal of Health Communication 2006 11 147 156 10.1080/10810730600637574 16641080
15. Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. K Armstrong E Micco A Carney J Stopfer M Putt, JAMA 2005 293 1729 1736 10.1001/jama.293.14.1729 15827311
16. Genetic exceptionalism vs. paradigm shift: Lessons from HIV. LF Ross, Journal of Law, Medicine and Ethics 2001 29 141 148
17. Psychological impact of predicting individuals' risks of illness: a systematic review. C Shaw K Abrams TM Marteau, Soc Sci Med 1999 49 1571 1598 10.1016/S0277-9536(99)00244-0 10574231
18. Psychological consequences of predictive genetic testing: A systematic review. M Broadstock S Michie T Marteau, European Journal of Human Genetics 2000 8 731 738 10.1038/sj.ejhg.5200532 11039571
19. Genetic susceptibility testing from a stress and coping perspective. HC Gooding K Organista J Burack BB Biesecker, Soc Sci Med 2006 62 1880 1890 10.1016/j.socscimed.2005.08.041 16198036
20. Incorporating genetic susceptibility feedback into a smoking cessation program for African-American smokers with low income. CM McBride G Bepler IM Lipkus P Lyna G Samsa J Albright S Datta BK Rimer, Cancer Epidemiol Biomarkers Prev 2002 11 521 528 12050092
21. Genetic risk and behavioural change. T Marteau C Lerman, BMJ 2001 322 1056 1159 11325776 10.1136/bmj.322.7293.1056
22. Psychological adjustment and knowledge about hereditary hemochromatosis in a clinic-based sample: a prospective study. B Meiser S Dunn J Dixon LW Powell, J Genet Couns 2005 14 453 463 10.1007/s10897-005-6192-y 16388326
23. Risk perception and decision-making in candidates for genetic testing for Huntington's disease: An interpretative phenomenological analysis. J Smith S Michie M Stephenson O Quarrel, Journal of Health Psychology 2002 7 2 131 144 10.1177/1359105302007002398
24. Lay understanding of familial risk of common chronic diseases: A systematic review and synthesis of qualitative research. F Walter J Emery D Braithwaite T Marteau, Annals of Family Medicine 2004 2 6 583 594 15576545 10.1370/afm.242
25. Disease knowledge and adherence to treatment in patients with familial hypercholesterolaemia. G Hollman AG Olsson AC Ek, Journal of Cardiovascular Nursing 2006 21 103 108 16601526
26. Psychological impact of genetic testing for familial hypercholesterolemia within a previously aware population: a randomized controlled trial. T Marteau V Senior SE Humphries M Bobrow T Cranston MA Crook L Day M Fernandez R Horne A Iversen, Am J Med Genet A 2004 128 285 293 10.1002/ajmg.a.30102 15216550
27. Long-term outcomes of genetic counselling in women at increased risk of developing hereditary breast cancer. B Meiser PN Butow AL Barratt V Schnieden M Gattas J Kirk C Gaff G Suthers K Tucker Psychological Impact Collaborative Group, Patient Educ Couns 2001 44 215 225 10.1016/S0738-3991(00)00191-9 11553422
28. Uncertain risk: genetic screening for susceptibility to haemochromatosis. A Bharadwaj, Health, Risk, and Society 2002 4 227 240 10.1080/ 1369857021000016605
29. Knowledge and educational needs of individuals with the factor V Leiden mutation. EA Hellmann ND Leslie S Moll, J Thromb Haemost 2003 1 11 2335 2339 10.1046/j.1538-7836.2003.00448.x 14629466
30. Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: a global problem. M Baars L Henneman L Ten Kate, Genetics in Medicine 2005 7 605 610 10.1097/01.gim. 0000182895.28432.c7 16301861
31. The challenge of integrating genetic medicine into primary care. J Emery S Hayflick, BMJ 2001 322 1027 1030 11325768 10.1136/bmj.322.7293.1027
32. The 'new genetics' and primary care: GP's views on their role and their education needs. E Watson D Shickle N Qureshi J Emery J Austoker, Family Practice 1999 16 4 420 425 10.1093/fampra/16.4.420 10493715
33. Integrating genetics as practices of primary care. R Robins S Metcalfe, Social Science & Medicine 2004 59 223 233 10.1016/j.socscimed.2003.10.025
34. Identifying future models of delivering genetic services: a nominal group study in primary care. G Elwyn A Edwards R Iredale P Davies J Gray, BMC Family Practice 2005 6 14 15831099 10.1186/1471-2296-6-14
35. Gynecologists' training, knowledge, and experiences in genetics: a survey. L Wilkins-Haug L Hill M Power G Holzman J Schulkin, Obstetrics Gynecology 2000 95 421 424 10.1016/S0029-7844(99)00581-5 10711556
36. Consent and confidentiality in genetic practice: Guidance on genetic testing and sharing of information. Joint Committee on Medical Genetics, 2006
37. DISCERN-Genetics: quality criteria for information on genetic testing. S Shepperd P Farndon V Grainge S Oliver M Parker R Perera H Bedford D Elliman A Kent P Rose, European Journal of Human Genetics 2006 14 1179 1188 10.1038/sj.ejhg.5201701 16868557
38. A prospective study of asymptomatic carriers of the Factor V Leiden mutation to determine the incidence of venous thromboembolism. S Middeldorp J Meinardi M Koopman E Van Pampus K Hamulyak J van der Meer M Prins H Büller, Annals of Internal Medicine 2001 135 322 327 11529695
39. Screening for thrombophilia in high-risk situations: systematic review and cost-effectiveness analysis. The Thrombosis: Risk and Economic Assessment of Thrombophilia Screening (TREATS) study. O Wu L Robertson L Twaddle GDO Lowe P Clark M Greaves ID Walker P Langhorne I Brenkel L Regan IA Greer, Health Technology Assessment 2006 10 11 16595080
40. Pregnancy failure and heritable thrombophilia. S Middeldorp, Semin Hematol 2007 44 93 97 10.1053/j.seminhematol.2007.01.005 17433901
41. Guideline: Investigation and management of heritable thrombophilia. I Walker M Greaves F Preston, British Journal of Haematology 2001 114 512 528 10.1046/j.1365-2141.2001.02981.x 11552975
42. American College of Medical Genetics consensus statement on factor V Leiden mutation testing. W Grody J Griffin A Taylor B Korf J Hiet, Genetics in Medicine 2001 3 139 148 10.1097/00125817-200103000-00009 11280951
43. Genetic testing for cardiovascular disease susceptibility: a useful clinical management tool or possible misinformation? SE Humphries PM Ridker PJ Talmud, Arteriosclerosis, Thrombosis and Vascular Biology 2004 24 628 636 10.1161/01.ATV.0000116216.56511.39
44. A list of tests offered by the UK GTN laboratories, UK Genetic Testing Network. UK Genetic Testing Network, 2003
45. Qualitative research and outcomes in health, social work and education. I Shaw, Qualitative Research 2003 3 57 77 10.1177/1468794103003001768
46. Discovery interviews. NHS Modernization Agency, 2003
47. The constant comparative method of qualitative analysis. B Glaser, Social Problems 1965 12 436 445
48. Standard occupational classification. National Statistics, 1990
49. Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia. PM Saukko SH Richards MH Shepherd JL Campbell, Soc Sci Med 2006 63 1947 1959 10.1016/j.socscimed.2006.04.012 16753245