Are enrollment sites the key to optimizing participation in genetic studies?

Genome Medicine

Volumn 3, Issue 6, 2011, Pages

  Helgesson, Gert ^a  

^a KAROLINSKA INSTITUTE   (Sweden)

Author keywords

Enrollment; Ethics; Genetic research; Myocardial infarction

Indexed keywords

ARTICLE; ETHICS; GENETIC ANALYSIS; GENETICS; HEART INFARCTION; HUMAN; MEDICAL RESEARCH; PRIORITY JOURNAL; RACE DIFFERENCE; SEX DIFFERENCE;

EID: 84863219140     PISSN: None     EISSN: 1756994X     Source Type: Journal    
DOI: 10.1186/gm257     Document Type: Article

References (10)

1. Lanfear DE, Jones PG, Tang F, Rathore SS, Spertus JA. Patient willingness to participate in genetic research after a myocardial infarction. Genome Med 2011, 3:39. 10.1186/gm255, 21676259.
2. Shavers VL, Lynch CF, Burmeister LF. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol 2002, 12:248-256. 10.1016/S1047-2797(01)00265-4, 11988413.
3. Espeland MA, Dotson K, Jaramillo SA, Kahn SE, Harrison B, Montez M, Foreyt JP, Montgomery B, Knowler WC, LOOK AHEAD Research Group Consent for genetics studies among clinical trial participants: findings from Action for Health in Diabetes (Look AHEAD). Clin Trials 2006, 3:443-456. 10.1177/1740774506070727, 2475573, 17060218, LOOK AHEAD Research Group.
4. Spruill IJ. Enhancing recruitment of African-American families into genetic research: lessons learned from Project SuGar. J Community Genet 2010, 1:125-132. 10.1007/s12687-010-0017-x, 21584223.
5. McQuillan GM, Pan Q, Porter KS. Consent for genetic research in a general population: an update on the National Health and Nutrition Examination Survey experience. Genet Med 2006, 8:354-360. 10.1097/01.gim.0000223552.70393.08, 16778597.
6. Wyatt SB, Diekelmann N, Henderson F, Andrew ME, Billingsley G, Felder SH, Fuqua S, Jackson PB. A community-driven model of research participation: the Jackson Heart Study Participant Recruitment and Retention Study. Ethn Dis 2003, 13:438-455.
7. Patterson AR, Davis H, Shelby K, McCoy J, Robinson LD, Rao SK, Banerji P, Tomlinson GE. Successful strategies for increasing African American participation in cancer genetic studies: hopeful signs for equalizing the benefits of genetic medicine. Community Genet 2008, 11:208-214. 10.1159/000116881, 18417968.
8. Levy D, Splansky GL, Strand NK, Atwood LD, Benjamin EJ, Blease S, Cupples LA, D'Agostino RB S, Fox CS, Kelly-Hayes M, Koski G, Larson MG, Mutalik KM, Oberacker E, O'Donnell CJ, Sutherland P, Valentino M, Vasan RS, Wolf PA, Murabito JM. Consent for genetic research in the Framingham heart study. Am J Med Genet 2010, 152A:1250-1256. 10.1002/ajmg.a.33377, 2923558, 20425830.
9. Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL. Public opinion about the importance of privacy in biobank research. Am J Hum Genet 2009, 85:643-654. 10.1016/j.ajhg.2009.10.002, 2775831, 19878915.
10. Trinidad SB, Fullerton SM, Ludman EJ, Jarvik GP, Larson EB, Burke W. Research practice and participant preferences: the growing gulf. Science 2011, 331:287-288. 10.1126/science.1199000, 21252333.