Risk, reward, and the double-edged sword: Perspectives on pharmacogenetic research and clinical testing among Alaska Native people

American Journal of Public Health

Volumn 103, Issue 12, 2013, Pages 2220-2225

  Shaw, Jennifer L ^a   Robinson, Renee ^a   Starks, Helene ^b   Burke, Wylie ^b   Dillard, Denise A ^a  

^a SOUTHCENTRAL FOUNDATION   (United States)

^b UNIVERSITY OF WASHINGTON   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; ATTITUDE TO HEALTH; ESKIMO; ETHNOLOGY; FEMALE; GENETIC SCREENING; GENETICS; HUMAN; INFORMATION PROCESSING; MALE; MEDICAL RESEARCH; PHARMACOGENETICS; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; REWARD; RISK ASSESSMENT; TRUST; UNITED STATES; YOUNG ADULT; INUIT; PSYCHOLOGY;

ADOLESCENT; ADULT; ALASKA; BIOMEDICAL RESEARCH; FEMALE; FOCUS GROUPS; GENETIC TESTING; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INUITS; MALE; PHARMACOGENETICS; QUALITATIVE RESEARCH; REWARD; RISK ASSESSMENT; TRUST; YOUNG ADULT;

EID: 84887269834     PISSN: 00900036     EISSN: 15410048     Source Type: Journal    
DOI: 10.2105/AJPH.2013.301596     Document Type: Article

References (46)

1. Lazarou J, Pomeranz BH, Corey PN. Incidence of adverse drug reactions in hospitalized patients: A metaanalysis of prospective studies. JAMA. 1998;279(15): 1200-1205.
2. Moore TJ, Cohen MR, Furberg CD. Serious adverse drug events reported to the Food and Drug Administration, 1998-2005. Arch Intern Med. 2007;167(16): 1752-1759.
3. Adam GI, Reneland R, Andersson M, Risinger C, Nilsson M, Lewander T. Pharmacogenomics to predict drug response. Pharmacogenomics. 2000;1(1):5-14.
4. Eichelbaum M, Ingelman-Sundberg M, Evans WE. Pharmacogenomics and individualized drug therapy. Annu Rev Med. 2006;57:119-137.
5. Evans WE, Relling MV. Moving towards individualized medicine with pharmacogenomics. Nature. 2004; 429(6990):464-468.
6. Shastry BS. Pharmacogenetics and the concept of individualized medicine. Pharmacogenomics J. 2006;6 (1):16-21.
7. Cavallari LHPM. The future of warfarin pharmacogenetics in under-represented minority groups. Future Cardiology. 2012;8(4):563-576.
8. Jaja C, Burke W, Thummel K, Edwards K, Veenstra DL. Cytochrome p450 enzyme polymorphism frequency in indigenous and Native American populations: A systematic review. Community Genet. 2008;11(3):141-149.
9. Foulks EF. Misalliances in the Barrow Alcohol Study. Am Indian Alsk Native Ment Health Res. 1989;2(3):7-17.
10. Harmon A. Indian tribe wins fight to limit research of its DNA. New York Times April 21, 2010;A1.
11. Jacobs B, Roffenbender J, Collmann J, et al. Bridging the divide between genomic science and indigenous peoples. J Law Med Ethics. 2010;38(3):684-696.
12. Markow T, Hedrick PW, Zuerlein K, et al. HLA polymorphism in the Havasupai: evidence for balancing selection. Am J Hum Genet. 1993;53(4):943-952.
13. Alving AS, Carson PE, Flanagan CL, Ickes CE. Enzymatic deficiency in primaquine-sensitive erythrocytes. Science. 1956;124(3220):484-485.
14. Caraco Y, Blotnick S, Muszkat M. CYP2C9 genotype-guided warfarin prescribing enhances the efficacy and safety of anticoagulation: A prospective randomized controlled study. Clin Pharmacol Ther. 2008;83 (3):460-470.
15. Hughes HB, Biehl JP, Jones AP, Schmidt LH. Metabolism of isoniazid in man as related to the occurrence of peripheral neuritis. Am Rev Tuberc. 1954;70 (2):266-273.
16. Bonham VL, Citrin T, Modell SM, Franklin TH, Bleicher EW, Fleck LM. Community-based dialogue: engaging communities of color in the United States' genetics policy conversation. J Health Polit Policy Law. 2009;34(3):325-359.
17. Rothman DJ. Research ethics at Tuskegee and Willowbrook. Am J Med. 1984;77(6):A49.
18. McCarthy CR. Historical background of clinical trials involving women and minorities. Acad Med. 1994;69 (9):695-698.
19. Attride-Stirling J. Thematic networks: An analytic tool for qualitative research. Qual Res. 2001;1(3):385-405.
20. Ayres L, Kavanaugh K, Knafl KA. Within-case and across-case approaches to qualitative data analysis. Qual Health Res. 2003;13(6):871-883.
21. Braun L. Race, ethnicity, and health: can genetics explain disparities? Perspect Biol Med. 2002;45(2):159-174.
22. Harty L, Johnson K, Power A. Race and ethnicity in the era of emerging pharmacogenomics. J Clin Pharmacol. 2006;46(4):405-407.
23. Rivara F, Finberg L. Use of the terms race and ethnicity. Arch Pediatr Adolesc Med. 2001;155(2):119.
24. Zachry WM 3rd, Armstrong EP. Health care professionals' perceptions of the role of pharmacogenomic data. J Manag Care Pharm. 2002;8(4):278-284.
25. Catz DS, Green NS, Tobin JN, et al. Attitudes about genetics in underserved, culturally diverse populations. Community Genet. 2005;8(3):161-172.
26. Haddy CA, Ward HM, Angley MT, McKinnon RA. Consumers' views of pharmacogenetics-a qualitative study. Res Social Adm Pharm. 2010;6(3):221-231.
27. Cheng Q, Evans WE. Cancer pharmacogenomics may require both qualitative and quantitative approaches. Cell Cycle. 2005;4(11):1506-1509.
28. Wong SH, Happy C, Blinka D, et al. From personalized medicine to personalized justice: The promises of translational pharmacogenomics in the justice system. Pharmacogenomics. 2010;11(6):731-737.
29. Wong WB, Carlson JJ, Thariani R, Veenstra DL. Cost effectiveness of pharmacogenomics: A critical and systematic review. Pharmacoeconomics. 2010;28(11): 1001-1013.
30. oering S, Holland S, Fryer-Edwards K. Transforming genetic research practices with marginalized communities: A case for responsive justice. Hastings Cent Rep. 2008;38(2):43-53.
31. Beskow LM, Botkin JR, Daly M, et al. Ethical issues in identifying and recruiting participants for familial genetic research. Am J Med Genet A. 2004;130A (4):424-431.
32. Beskow LM, Dean E. Informed consent for biorepositories: Assessing prospective participants' understanding and opinions. Cancer Epidemiol Biomarkers Prev. 2008;17(6):1440-1451.
33. Beskow LM, Friedman JY, Hardy NC, Lin L, Weinfurt KP. Simplifying informed consent for biorepositories: stakeholder perspectives. Genet Med. 2010;12 (9):567-572.
34. Issa AM. Ethical considerations in clinical pharmacogenomics research. Trends Pharmacol Sci. 2000;21 (7):247-249.
35. Weijer C, Emanuel EJ. Ethics. Protecting communities in biomedical research. Science. 2000;289 (5482):1142-1144.
36. Weijer C, Miller PB. Protecting communities in pharmacogenetic and pharmacogenomic research. Pharmacogenomics J. 2004;4(1):9-16.
37. Fretts AM, Howard BV, Kriska AM, et al. Physical activity and incident diabetes in American Indians: The Strong Heart Study. Am J Epidemiol. 2009;170(5):632- 639.
38. Schweigman K, Eichner J, Welty TK, Zhang Y. Cardiovascular disease risk factor awareness in American Indian communities: The strong heart study. Ethn Dis. 2006;16(3):647-652.
39. North KE, Howard BV, Welty TK, et al. Genetic and environmental contributions to cardiovascular disease risk in American Indians: The strong heart family study. Am J Epidemiol. 2003;157(4):303-314.
40. Howard BV, Lee ET, Yeh JL, et al. Hypertension in adult American Indians. The Strong Heart Study. Hypertension. 1996;28(2):256-264.
41. Lee ET, Welty TK, Fabsitz R, et al. The Strong Heart Study. A study of cardiovascular disease in American Indians: design and methods. Am J Epidemiol. 1990;132 (6):1141-1155.
42. Fialkowski MK, Okoror TA, Boushey CJ. The relevancy of community-based methods: using diet within Native American and Alaska Native adult populations as an example. Clin Transl Sci. 2012;5(3):295-300.
43. Hoeft TJ, Burke W, Hopkins SE, et al. Building partnerships in community-based participatory research: budgetary and other cost considerations. Health Promot Pract. Epub ahead of print, April 30, 2013.
44. Jernigan VB. Community-based participatory research with Native American communities: The Chronic Disease Self-Management Program. Health Promot Pract. 2010;11(6):888-899.
45. Katz JR, Martinez T, Paul R. Community-based participatory research and American Indian/Alaska Native nurse practitioners: A partnership to promote adolescent health. J Am Acad Nurse Pract. 2011;23 (6):298-304.
46. Redwood D, Lanier A, Kemberling M, Klejka J, Sylvester I, Lundgren K. Community-based participatory research in a large cohort study of chronic diseases among Alaska native adults. Prog Community Health Partnersh. 2010;4(4):325-330.