Public attitudes toward ancillary information revealed by pharmacogenetic testing under limited information conditions

Genetics in Medicine

Volumn 13, Issue 8, 2011, Pages 723-728

  Haga, Susanne B ^a   O'Daniel, Julianne M ^a   Tindall, Genevieve M ^a   Lipkus, Isaac R ^a   Agans, Robert ^b  

^a DUKE UNIVERSITY   (United States)

^b IL   (United States)

Author keywords

attitudes; consent; pharmacogenetic testing; public; survey

Indexed keywords

ADULT; ALZHEIMER DISEASE; ARTICLE; CLINICAL PRACTICE; DEMENTIA; DISEASE SEVERITY; EDUCATION; FEMALE; GENETIC RISK; GENETIC VARIABILITY; HEALTH SURVEY; HUMAN; LEARNING; MALE; MEDICAL INFORMATION; PHARMACOGENETICS; PHYSICIAN; PRACTICE GUIDELINE; RACE DIFFERENCE; RISK ASSESSMENT; RISK BENEFIT ANALYSIS; VALIDITY;

ADOLESCENT; ADULT; DISCLOSURE; FEMALE; GENETIC TESTING; HUMANS; MALE; MIDDLE AGED; PHARMACOGENETICS; PUBLIC OPINION; QUESTIONNAIRES; RANDOM ALLOCATION; YOUNG ADULT;

EID: 80051791347     PISSN: 10983600     EISSN: 15300366     Source Type: Journal    
DOI: 10.1097/GIM.0b013e31821afcc0     Document Type: Article

References (52)

1. Evans WE, McLeod HL. Pharmacogenomics-drug disposition, drug targets, and side effects. N Engl J Med 2003;348:538-549. (Pubitemid 36159890)
2. Frueh FW, Amur S, Mummaneni P, et al. Pharmacogenomic biomarker information in drug labels approved by the United States food and drug administration: prevalence of related drug use. Pharmacotherapy 2008;28:992-998.
3. Roses AD. Pharmacogenetics and the practice of medicine. Nature 2000;405:857-865. (Pubitemid 30407864)
4. Robertson JA. Consent and privacy in pharmacogenetic testing. Nat Genet 2001;28:207-209. (Pubitemid 32626017)
5. Visser LE, Trienekens PH, De Smet PA, et al. Patients with an ApoE epsilon4 allele require lower doses of coumarin anticoagulants. Pharmacogenet Genomics 2005;15:69-74. (Pubitemid 40562983)
6. Sconce EA, Daly AK, Khan TI, Wynne HA, Kamali F. APOE genotype makes a small contribution to warfarin dose requirements. Pharmacogenet Genomics 2006;16:609-611. (Pubitemid 44100205)
7. Ordovas JM, Lopez-Miranda J, Perez-Jimenez F, et al. Effect of apolipoprotein E and A-IV phenotypes on the low density lipoprotein response to HMG CoA reductase inhibitor therapy. Atherosclerosis 1995;113:157-166.
8. Gerdes LU, Gerdes C, Kervinen K, et al. The apolipoprotein epsilon4 allele determines prognosis and the effect on prognosis of simvastatin in survivors of myocardial infarction: a substudy of the Scandinavian simvastatin survival study. Circulation 2000;101:1366-1371. (Pubitemid 30169856)
9. Corder EH, Saunders AM, Strittmatter WJ, et al. Gene dose of apolipoprotein E type 4 allele and the risk of Alzheimer's disease in late onset families. Science 1993;261:921-923. (Pubitemid 23275809)
10. Thakkinstian A, Bowe S, McEvoy M, Smith W, Attia J. Association between apolipoprotein E polymorphisms and age-related macular degeneration: a HuGE review and meta-analysis. Am J Epidemiol 2006;164:813-822. (Pubitemid 44627265)
11. Henrikson NB, Burke W, Veenstra DL. Ancillary risk information and pharmacogenetic tests: social and policy implications. Pharmacogenomics J 2008;8:85-89. (Pubitemid 351411544)
12. Orme NM, Fletcher JG, Siddiki HA, et al. Incidental findings in imaging research: evaluating incidence, benefit, and burden. Arch Intern Med 2010;170:1525-1532.
13. Ravine D, Gibson RN, Donlan J, Sheffield LJ. An ultrasound renal cyst prevalence survey: specificity data for inherited renal cystic diseases. Am J Kidney Dis 1993;22:803-807. (Pubitemid 23353611)
14. Grumbach MM, Biller BM, Braunstein GD, et al. Management of the clinically inapparent adrenal mass ("incidentaloma"). Ann Intern Med 2003;138:424-429. (Pubitemid 36262654)
15. Nawar R, Aron D. Adrenal incidentalomas-a continuing management dilemma. Endocr Relat Cancer 2005;12:585-598. (Pubitemid 41482994)
16. Post SG, Whitehouse PJ, Binstock RH, et al. The clinical introduction of genetic testing for Alzheimer disease. An ethical perspective. JAMA 1997;277:832-836. (Pubitemid 27111321)
17. Haga SB, Burke W. Pharmacogenetic testing: not as simple as it seems. Genet Med 2008;10:391-395.
18. Haga S, O'Daniel J, Tindall G, Lipkus IM, Agans R. Survey of U. S. public attitudes towards pharmacogenetic testing. Pharmacogenomics J [published online ahead of print February 15, 2011].
19. The American Association for Public Opinion Research. Standard definitions: final dispositions of case codes and outcome rates for surveys, 7th ed. Lenexa, Kansas: AAPOR, 2011.
20. US Census Bureau. American Community Survey 2008, 2008. Available at: http://www.census.gov/acs/www/. Accessed April 12, 2011.
21. Zahran HS, Kobau R, Moriarty DG, Zack MM, Holt J, Donehoo R. Healthrelated quality of life surveillance-United States, 1993-2002. MMWR Surveill Summ 2005;54:1-35.
22. Centers for Disease Control and Prevention (CDC). Self-rated fair or poor health among adults with diabetes-United States, 1996-2005. MMWR Morb Mortal Wkly Rep 2006;55:1224-1227.
23. Levy DE, Youatt EJ, Shields AE. Primary care physicians' concerns about offering a genetic test to tailor smoking cessation treatment. Genet Med 2007;9:842-849. (Pubitemid 350295212)
24. Park ER, Kleimann S, Pelan JA, Shields AE. Anticipating clinical integration of genetically tailored tobacco dependence treatment: perspectives of primary care physicians. Nicotine Tob Res 2007;9:271-279. (Pubitemid 47009073)
25. Shields AE, Levy DE, Blumenthal D, et al. Primary care physicians' willingness to offer a new genetic test to tailor smoking treatment, according to test characteristics. Nicotine Tob Res 2008;10:1037-1045. (Pubitemid 351998440)
26. Kon AA. The shared decision-making continuum. JAMA 2010;304:903-904.
27. Buchanan A, Califano A, Kahn J, McPherson E, Robertson J, Brody B. Pharmacogenetics: ethical issues and policy options. Kennedy Inst Ethics J 2002;12:1-15.
28. Haga S. Ethical, legal, and social challenges to applied pharmacogenetics. Pharmacogenomics: applications to patient care, 2nd ed. Kansas City, MO: American College of Clinical Pharmacy, 2009.
29. NIH state-of-the-science statement on management of the clinically inapparent adrenal mass ("incidentaloma"). NIH Consens State Sci Statements 2002;19:1-25.
30. Stone JH. Incidentalomas-clinical correlation and translational science required. N Engl J Med 2006;354:2748-2749. (Pubitemid 43974192)
31. Silverman SG, Israel GM, Herts BR, Richie JP. Management of the incidental renal mass. Radiology 2008;249:16-31.
32. Wolf SM, Paradise J, Caga-anan C. The law of incidental findings in human subjects research: establishing researchers' duties. J Law Med Ethics 2008;36:361-383, 214.
33. Woelderink A, Ibarreta D, Hopkins MM, Rodriguez-Cerezo E. The current clinical practice of pharmacogenetic testing in Europe: TPMT and HER2 as case studies. Pharmacogenomics J 2006;6:3-7. (Pubitemid 43118304)
34. Hedgecoe A. 'At the point at which you can do something about it, then it becomes more relevant': informed consent in the pharmacogenetic clinic. Soc Sci Med 2005;61:1201-1210. (Pubitemid 40828565)
35. Hedgecoe AM. Context, ethics and pharmacogenetics. Stud Hist Philos Biol Biomed Sci 2006;37:566-582. (Pubitemid 44356445)
36. Lipkus IM. Numeric, verbal, and visual formats of conveying health risks: suggested best practices and future recommendations. Med Decis Making 2007;27:696-713. (Pubitemid 47547606)
37. Persky S, Kaphingst KA, Condit CM, McBride CM. Assessing hypothetical scenario methodology in genetic susceptibility testing analog studies: a quantitative review. Genet Med 2007;9:727-738. (Pubitemid 350129407)
38. 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. (Pubitemid 43823507)
39. Bloss CS, Ornowski L, Silver E, et al. Consumer perceptions of direct-toconsumer personalized genomic risk assessments. Genet Med 2010;12:556-566.
40. Savage I. Demographic influences on risk perceptions. Risk Anal 1993;13:413-420. (Pubitemid 24022591)
41. Axworthy D, Brock DJ, Bobrow M, Marteau TM. Psychological impact of population-based carrier testing for cystic fibrosis:3-year follow-up. UK Cystic Fibrosis Follow-Up Study Group. Lancet 1996;347:1443-1446. (Pubitemid 26161207)
42. Marteau TM, Dundas R, Axworthy D. Long-term cognitive and emotional impact of genetic testing for carriers of cystic fibrosis: the effects of test result and gender. Health Psychol 1997;16:51-62. (Pubitemid 127465953)
43. Shiloh S, Saxe L. Perception of risk in genetic counseling. Psychol Health 1989;3:45-61.
44. Warner D, Procaccino JD. Toward wellness: women seeking health information. J Am Soc Information Sci Technol 2004;55:709-730.
45. Ignagni K. Women's primary health care and the search for quality-panel discussion. Women's Health Issues 2001;11:309-313.
46. Brown JB, Carroll J, Boon H, Marmoreo J. Women's decision-making about their health care: views over the life cycle. Patient Educ Couns 2002;48:225-231. (Pubitemid 35449671)
47. MacInnes JD. The illness perceptions of women following acute myocardial infarction: implications for behaviour change and attendance at cardiac rehabilitation. Women Health 2005;42:105-121.
48. Roberts JS, Barber M, Brown TM, et al. Who seeks genetic susceptibility testing for Alzheimer's disease? Findings from a multisite, randomized clinical trial. Genet Med 2004;6:197-203. (Pubitemid 39005859)
49. Johnson AD, Bhimavarapu A, Benjamin EJ, et al. CLIA-tested genetic variants on commercial SNP arrays: potential for incidental findings in genome-wide association studies. Genet Med 2010;12:355-363.
50. Kohane IS, Masys DR, Altman RB. The incidentalome: a threat to genomic medicine. JAMA 2006;296:212-215. (Pubitemid 44050375)
51. Cho MK. Understanding incidental findings in the context of genetics and genomics. J Law Med Ethics 2008;36:280-285, 212.
52. Van Ness B. Genomic research and incidental findings. J Law Med Ethics 2008;36:292-297, 212.