Community dissemination and genetic research: Moving beyond results reporting

American Journal of Medical Genetics, Part A

Volumn 167, Issue 7, 2015, Pages 1542-1550

  Trinidad, Susan Brown ^a   Ludman, Evette J ^b   Hopkins, Scarlett ^c   James, Rosalina D ^a   Hoeft, Theresa J ^c   Kinegak, Annie ^c   Lupie, Henry ^c   Kinegak, Ralph ^c   Boyer, Bert B ^c   Burke, Wylie ^a  

^a UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE   (United States)

^b GROUP HEALTH RESEARCH INSTITUTE   (United States)

^c UNIVERSITY OF ALASKA FAIRBANKS   (United States)

Author keywords

Alaska Native; Communication; Dissemination; Genetic research; Qualitative research

Indexed keywords

ADULT; AGED; ARTICLE; COMMUNITY DISSEMINATION; CONVERSATION; FAMILY RELATION; FEMALE; GENETIC INFORMATION; GENETICS; HEALTH PROMOTION; HUMAN; INFORMATION; INFORMATION DISSEMINATION; INFORMATION SEEKING; INTERPERSONAL COMMUNICATION; LIFESTYLE; MALE; MEDICAL INFORMATION; PARTICIPATORY RESEARCH; PRIORITY JOURNAL; TOTAL QUALITY MANAGEMENT; UNITED STATES; YOUNG ADULT; ALASKA; HEALTH MAINTENANCE ORGANIZATION; INFORMATION PROCESSING; INTERNET; INUIT; MEDICAL GENETICS; PROCEDURES; PSYCHOLOGY; RESEARCH; STANDARDS; WASHINGTON;

ALASKA; COMMUNITY-BASED PARTICIPATORY RESEARCH; FOCUS GROUPS; GENETICS, MEDICAL; HEALTH MAINTENANCE ORGANIZATIONS; HUMANS; INFORMATION DISSEMINATION; INTERNET; INUITS; RESEARCH REPORT; WASHINGTON;

EID: 84931564309     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/ajmg.a.37028     Document Type: Article

References (40)

1. Allen J, Mohatt GV, Rasmus SM, Hazel KL, Thomas L, Lindley S. 2006. The tools to understand: Community as co-researcher on culture-specific protective factors for Alaska Natives. J Prev Interv Community 32:41-59.
2. Barkin S, Schlundt D, Smith P. 2013. Community-engaged research perspectives: Then and now. Acad Pediatr 13:93-97.
3. Bates BR. 2005. Public culture and public understanding of genetics: A focus group study. Public Underst Sci 14:47-65.
4. Burhansstipanov L, Christopher S, Schumacher SA. 2005. Lessons learned from community-based participatory research in Indian country. Cancer Control 12:70-76.
5. Chen PG, Diaz N, Lucas G, Rosenthal MS. 2010. Dissemination of results in community-based participatory research. Am J Prev Med 39:372-378.
6. Condit CM. 2010. Public understandings of genetics and health. Clin Genet 77:1-9.
7. Condit CM, Dubriwny T, Lynch J, Parrott R. 2004. Lay people's understanding of and preference against the word "mutation". Am J Med Genet Part A 130A:245-250.
8. Couzin-Frankel J. 2010. Ethics. Researchers to return blood samples to the Yanomamo. Science 328:1218.
9. Disis ML, Slattery JT. 2010. The road we must take: Multidisciplinary team science. Sci Transl Med 2:22cm9.
10. Elwyn G, Dehlendorf C, Epstein RM, Marrin K, White J, Frosch DL. 2014. Shared decision making and motivational interviewing: Achieving patient-centered care across the spectrum of health care problems. Ann Fam Med 12:270-275.
11. Evans JP, Rothschild BB. 2012. Return of results: Not that complicated? Genet Med 14:358-360.
12. Fabsitz RR, McGuire A, Sharp RR, Puggal M, Beskow LM, Biesecker LG, Bookman E, Burke W, Burchard EG, Church G, Clayton EW, Eckfeldt JH, Fernandez CV, Fisher R, Fullerton SM, Gabriel S, Gachupin F, James C, Jarvik GP, Kittles R, Leib JR, O'Donnell C, O'Rourke PP, Rodriguez LL, Schully SD, Shuldiner AR, Sze RK, Thakuria JV, Wolf SM, Burke GL. 2010. Ethical and practical guidelines for reporting genetic research results to study participants: Updated guidelines from a National Heart, Lung, and Blood Institute working group. Circ Cardiovasc Genet 3:574-580.
13. Foster MW, Sharp RR, Freeman WL, Chino M, Bernsten D, Carter TH. 1999. The role of community review in evaluating the risks of human genetic variation research. Am J Hum Genet 64:1719-1727.
14. Grande SW, Durand MA, Fisher ES, Elwyn G. 2014. Physicians as part of the solution? Community-based participatory research as a way to get shared decision making into practice. J Gen Intern Med 29:219-222.
15. Guston DH. 2004. Forget politicizing science. Let's democratize science. Issues Sci Technol 21:25-28.
16. Harmon A. 2010. Indian tribe wins fight to limit research of its DNA. New York: New York Times.
17. Henderson GE, Wolf SM, Kuczynski KJ, Joffe S, Sharp RR, Parsons DW, Knoppers BM, Yu JH, Appelbaum PS. 2014. The challenge of informed consent and return of results in translational genomics: Empirical analysis and recommendations. J Law Med Ethics 42:344-355.
18. Hoeft TJ, Burke W, Hopkins SE, Charles W, Trinidad SB, James RD, Boyer BB. 2014. Building partnerships in community-based participatory research: Budgetary and other cost considerations. Health Promot Pract 15:263-270.
19. Hood NE, Brewer T, Jackson R, Wewers ME. 2010. Survey of community engagement in NIH-funded research. Clin Transl Sci 3:19-22.
20. Hsieh HF, Shannon SE. 2005. Three approaches to qualitative content analysis. Qual Health Res 15:1277-1288.
21. Isler MR, Corbie-Smith G. 2012. Practical steps to community engaged research: From inputs to outcomes. J Law Med Ethics 40:904-914.
22. Israel BA, Schulz AJ, Parker EA, Becker AB. 1998. Review of community-based research: Assessing partnership approaches to improve public health. Annu Rev Public Health 19:173-202.
23. James R, Starks H. 2011. Bringing the "best science" to bear on youth suicide: Why community perspectives matter. In: Burke W, Edwards K, Goering S, Holland S, Trinidad SB, editors. Achieving justice in genomic translation: Rethinking the pathway to benefit. New York: Oxford University Press. pp 180-196.
24. Jarvik GP, Amendola LM, Berg JS, Brothers K, Clayton EW, Chung W, Evans BJ, Evans JP, Fullerton SM, Gallego CJ, Garrison NA, Gray SW, Holm IA, Kullo IJ, Lehmann LS, McCarty C, Prows CA, Rehm HL, Sharp RR, Salama J, Sanderson S, Van Driest SL, Williams MS, Wolf SM, Wolf WA, Burke W. 2014. Return of genomic results to research participants: The floor, the ceiling, and the choices in between. Am J Hum Genet 94:818-826.
25. Marcus AD. 2011. Citizen Scientists. New York: Wall Street Journal.
26. NIH 2003a. Final NIH Statement on Sharing Research Data, NOT-OD-03-032, February 26, 2003.
27. NIH 2003b. Reaffirmation ... Projects, www.genome.gov/1056537, last reviewed March 9, 2012, accessed February 23, 2015.
28. NIH 2007. NIH Genomic Data Sharing Policy, NOT-OD-14-124, August 27, 2014.
29. Patton MQ. 2002. Qualitative research & evaluation methods. Thousand Oaks, CA: Sage Publications.
30. Phillips RL, Short A, Kenning A, Dugdale P, Nugus P, McGowan R, Greenfield D. 2014. Achieving patient-centred care: The potential and challenge of the patient-as-professional role. Health Expect Epub ahead of print. PMID: 25040882. DOI: 10.1111/hex.12234.
31. Politi MC, Wolin KY, Legare F. 2013. Implementing clinical practice guidelines about health promotion and disease prevention through shared decision making. J Gen Intern Med 28:838-844.
32. Rivkin I, Trimble J, Lopez ED, Johnson S, Orr E, Allen J. 2013. Disseminating research in rural Yup'ik communities: challenges and ethical considerations in moving from discovery to intervention development. Int J Circumpolar Health 72. PMID: 23984272. DOI: 10.3402/ijch.v72i0.20958.
33. Santos L. 2008. Genetic research in native communities. Prog Community Health Partnersh 2:321-327.
34. Tabor HK, Lappe MD. 2011. The autism genetic resource exahange: Changing pace, priorities, and roles in discovery science. In: Burke W, Edwards K, Goering S, Holland S, Trinidad SB, editors. Achieving justice in genomic translation: Rethinking the pathway to benefit. New York: Oxford University Press. pp 56-71.
35. Wellcome Trust 2003. Sharing Data from Large-scale Biological Research Projects: A System of Tripartite Responsibility. London.
36. Wiwchar D. 2004. Nuu-chah-nulth blood returns to west coast. Ha-Shilth-Sa. 5 ed.
37. Wong-Parodi G, Strauss BH. 2014. Team science for science communication. Proc Natl Acad Sci USA 111:13658-13663.
38. Yu JH, Crouch J, Jamal SM, Tabor HK, Bamshad MJ. 2013a. Attitudes of African Americans toward return of results from exome and whole genome sequencing. Am J Med Genet Part A 161A:1064-1072.
39. Yu JH, Jamal SM, Tabor HK, Bamshad MJ. 2013b. Self-guided management of exome and whole-genome sequencing results: changing the results return model. Genet Med 15:684-690.
40. Zeuner R, Frosch DL, Kuzemchak MD, Politi MC. 2014. Physicians' perceptions of shared decision-making behaviours: a qualitative study demonstrating the continued chasm between aspirations and clinical practice. Health Expect Epub ahead of print. PMID 24938120. DOI: 10.111/hex.12216.