Sociocultural variation in attitudes toward use of genetic information and participation in genetic research by race in the United States: Implications for precision medicine

Journal of the American Medical Informatics Association

Volumn 23, Issue 4, 2016, Pages 782-786

  Dye, Timothy ^a   Li, Dongmei ^a   Demment, Margaret ^a   Groth, Susan ^b   Fernandez, Diana ^b   Dozier, Ann ^b   Chang, Jack ^a  

^a UNIVERSITY OF ROCHESTER MEDICAL CENTER   (United States)

^b UNIVERSITY OF ROCHESTER   (United States)

Author keywords

African American; Disparities; Genetic research; Genetic testing; Personalized medicine; Precision medicine; Race

Indexed keywords

AFRICAN AMERICAN; ATTENTION; CLINICAL PRACTICE; GENETIC MODEL; GENETIC SCREENING; GENETICS; HUMAN; MAJOR CLINICAL STUDY; PERSONALIZED MEDICINE; RACE; STATISTICAL MODEL; UNITED STATES; ATTITUDE TO HEALTH; CAUCASIAN; ETHNOLOGY;

AFRICAN AMERICANS; ATTITUDE TO HEALTH; EUROPEAN CONTINENTAL ANCESTRY GROUP; GENETIC RESEARCH; GENETIC TESTING; HUMANS; PRECISION MEDICINE; UNITED STATES;

EID: 84981240052     PISSN: 10675027     EISSN: 1527974X     Source Type: Journal    
DOI: 10.1093/jamia/ocv214     Document Type: Article

References (50)

1. Fox JL. Obama catapults patient-empowered Precision Medicine. Nat Biotechnol. 2015;33(4):325-325
2. Collins FS. Exceptional opportunities in medical science: a view from the National Institutes of Health. JAMA. 2015;313(2):131-132.
3. Burke W, Korngiebel DM, Cho M. Closing the gap between knowledge and clinical application: challenges for genomic translation. PLoS Genetics. 2015;11(2):e1004978-e78.
4. Khoury MJ, Gwinn ML, Glasgow RE, Kramer BS. A population approach to precision medicine. Am J Prevent Med. 2012;42(6):639-645.
5. David SP, Johnson SG, Berger AC, et al. Making personalized health care even more personalized: insights from activities of the IOM genomics roundtable. Ann Family Med. 2015;13(4):373-380.
6. Rubin R. Precision medicine: the future or simply politics? JAMA 2015;313(11):1089-1091.
7. Tuckson RV, Newcomer L, De Sa JM. Accessing genomic medicine: affordability, diffusion, and disparities. JAMA. 2013;309(14):1469-1470.
8. Streicher SA, Sanderson SC, Jabs EW, et al. Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study. J Commun Genetics. 2011;2(3):153-163.
9. Byrd GS, Edwards CL, Kelkar VA, et al. Recruiting intergenerational African American males for biomedical research studies: a major research challenge. J Natl Med Assoc. 2011;103(6):480.
10. Sanderson SC, Diefenbach MA, Zinberg R, et al. Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study. J Commun Genetics. 2013;4(4):469-482.
11. Ravitsky V, Wilfond BS. Disclosing individual genetic results to research participants. Am J Bioethics. 2006;6(6):8-17.
12. Murphy J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K. Public expectations for return of results from large-cohort genetic research. Am J Bioethics. 2008;8(11):36-43.
13. Paolacci G, Chandler J. Inside the turk understanding mechanical turk as a participant pool. Curr Directions Psychol Sci. 2014;23(3):184-188.
14. Buhrmester M, Kwang T, Gosling SD. Amazon's Mechanical Turk a new source of inexpensive, yet high-quality, data? Perspect Psychol Sci. 2011;6(1):3-5.
15. Paolacci G, Chandler J, Ipeirotis PG. Running experiments on amazon mechanical turk. Judgm Decis Mak. 2010;5(5):411-419.
16. Berinsky AJ, Huber GA, Lenz GS. Evaluating online labor markets for experimental research: Amazon. com's Mechanical Turk. Polit Anal 2012;20(3):351-368.
17. Mason W, Suri S. Conducting behavioral research on Amazon's Mechanical Turk. Behav Res Methods. 2012;44(1):1-23.
18. Henneman L, Vermeulen E, van El CG, Claassen L, Timmermans DR, Cornel MC. Public attitudes towards genetic testing revisited: comparing opinions between 2002 and 2010. Eur J Hum Genetics. 2013;21(8):793-799.
19. Green D, Cushman M, Dermond N, et al. Obtaining informed consent for genetic studies The Multiethnic Study of Atherosclerosis. Am J Epidemiol. 2006;164(9):845-851.
20. Wallston KA, Wallston BS, DeVellis R. Development of the multidimensional health locus of control (MHLC) scales. Health Educ Behav. 1978;6(1): 160-170.
21. Dobson AJ, Barnett A. An Introduction to Generalized Linear Models. CRC Press; 2008.
22. Hosmer DW Jr, Lemeshow S. Applied Logistic Regression. John Wiley & Sons; 2004.
23. Hoeyer K, Lynöe N. Motivating donors to genetic research? Anthropological reasons to rethink the role of informed consent. Med, Health Care Philosophy. 2006;9(1):13-23.
24. Lipworth W, Forsyth R, Kerridge I. Tissue donation to biobanks: a review of sociological studies. Sociol Health Illness. 2011;33(5):792-811.
25. Hoeyer K, Olofsson B-O, Mjörndal T, Lynöe N. Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scand J Public Health. 2004;32(3):224-229.
26. O'Daniel J, Haga S. Public perspectives on returning genetics and genomics research results. Public Health Genomics. 2011;14(6):346-355.
27. Furr LA. Perceptions of genetics research as harmful to society: differences among samples of African-Americans and European-Americans. Genetic Testing. 2002;6(1):25-30.
28. Halverson CM, Ross LF. Engaging African-Americans about biobanks and the return of research results. J Commun Genetics. 2012;3(4): 275-283.
29. Shavers-Hornaday VL, Lynch CF, Burmeister LF, Torner JC. Why are African Americans under-represented in medical research studies? Impediments to participation. Ethnicity Health. 1997;2(1-2):31-45.
30. Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S. Attitudes and beliefs of African Americans toward participation in medical research. J General Int Med. 1999;14(9):537-546.
31. Shavers VL, Lynch CF, Burmeister LF. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol. 2002;12(4):248-256.
32. Wendler D, Kington R, Madans J, et al. Are racial and ethnic minorities less willing to participate in health research? PLoS Med. 2006;3(2):201.
33. Ramos E, Callier SL, Rotimi CN. Why personalized medicine will fail if we stay the course. Personalized Med. 2012;9(8):839-847.
34. LaVeist TA, Nickerson KJ, Bowie JV. Attitudes about racism, medical mistrust, and satisfaction with care among African American and white cardiac patients. Med Care Res Rev. 2000;57(4 Suppl):146-161.
35. Corbie-Smith G, Thomas SB, George DMMS. Distrust, race, and research. Arch Int Med. 2002;162(21):2458-2463.
36. Randall VR. Slavery, Segregation and racism: trusting the health care system ain't always easy-an African American Perspective on Bioethics. Louis U Pub L Rev 1995;15:191.
37. Gamble VN. A legacy of distrust: African Americans and medical research. Am J Prevent Med. 1993.
38. Freimuth VS, Quinn SC, Thomas SB, Cole G, Zook E, Duncan T. African Americans' views on research and the Tuskegee Syphilis Study. Soc Sci Med. 2001;52(5):797-808.
39. Braunstein JB, Sherber NS, Schulman SP, Ding EL, Powe NR. Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials. Medicine. 2008;87(1):1-9.
40. Washington HA. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. New York: Doubleday Books; 2006.
41. Hughes C, Fasaye G-A, LaSalle VH, Finch C. Sociocultural influences on participation in genetic risk assessment and testing among African American women. Patient Educ Counseling. 2003;51(2):107-114.
42. Laskey SL, Williams J, Pierre-Louis J, O'Riordan M, Matthews A, Robin NH. Attitudes of African American premedical students toward genetic testing and screening. Genetics Med. 2003;5(1):49-54.
43. Skloot R, Turpin B. The Immortal Life of Henrietta Lacks. New York: Crown Publishers; 2010;363(3):204-7. doi: 10.1056/NEJMp1005203.
44. Mello MM, Wolf LE. The Havasupai Indian tribe case-lessons for research involving stored biologic samples. New Engl J Med. 2010; 363(3):204-207.
45. Santos L. Genetic research in native communities. Prog Community Health Partnersh. 2008;2(4):321.
46. Reardon J, TallBear K. Your DNA is our history. Curr Anthropol. 2012; 53(S5):S233-S245.
47. Precision Medicine Initiative (PMI) Working Group. The Precision Medicine Initiative Cohort Program: Building a Research Foundation for 21st Century Medicine. Bethesda, MA: National Institutes of Health; 2015.
48. Gosling SD, Vazire S, Srivastava S, John OP. Should we trust web-based studies? A comparative analysis of six preconceptions about internet questionnaires. Am Psychol. 2004;59(2):93.
49. Patterson AR, Davis H, Shelby K, et al. Successful strategies for increasing African American participation in cancer genetic studies: hopeful signs for equalizing the benefits of genetic medicine. Public Health Genomics. 2008;11(4):208-214.
50. Spruill IJ. Enhancing recruitment of African-American families into genetic research: lessons learned from Project SuGar. J Commun Genetics. 2010;1(3):125-132.