About this Journal Submit a Manuscript Table of Contents
Nursing Research and Practice
Volume 2013 (2013), Article ID 935740, 8 pages
http://dx.doi.org/10.1155/2013/935740
Research Article

Recruiting for Epigenetic Research: Facilitating the Informed Consent Process

1School of Nursing, Virginia Commonwealth University, P.O. Box 980567, Richmond, VA 23298, USA
2Department of Pathology, Virginia Commonwealth University, Richmond, VA 23298, USA

Received 18 April 2013; Accepted 24 May 2013

Academic Editor: Leorey Saligan

Copyright © 2013 Nancy Jallo et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Linked References

  1. E. E. Steinke, “Research ethics, informed consent, and participant recruitment,” Clinical Nurse Specialist, vol. 18, no. 2, pp. 88–96, 2004. View at Scopus
  2. S. Ibrahim and S. Sidani, “Strategies to recruit minority persons: a systematic review,” Journal of Immigrant and Minority Health, 2013. View at Publisher · View at Google Scholar
  3. C. L. Gilliss, K. A. Lee, Y. Gutierrez et al., “Recruitment and retention of healthy minority women into community-based longitudinal research,” Journal of Women's Health and Gender-Based Medicine, vol. 10, no. 1, pp. 77–85, 2001. View at Publisher · View at Google Scholar · View at Scopus
  4. C. R. Horowitz, B. L. Brenner, S. Lachapelle, D. A. Amara, and G. Arniella, “Effective recruitment of minority populations through community-led strategies,” American Journal of Preventive Medicine, vol. 37, no. 6, supplement 1, pp. S195–S200, 2009. View at Publisher · View at Google Scholar · View at Scopus
  5. S. Treweek, P. Lockhart, M. Pitkethly, et al., “Methods to improve recruitment to randomised controlled trials: cochrane systematic review and meta-analysis,” BMJ Open, vol. 3, no. 2, 2013.
  6. N. J. Ellish, D. Scott, R. Royak-Schaler, and E. J. Higginbotham, “Community-based strategies for recruiting older, African Americans into a behavioral intervention study,” Journal of the National Medical Association, vol. 101, no. 11, pp. 1104–1111, 2009. View at Scopus
  7. G. R. Sadler, M. Peterson, L. Wasserman et al., “Recruiting research participants at community education sites,” Journal of Cancer Education, vol. 20, no. 4, pp. 235–239, 2005. View at Publisher · View at Google Scholar · View at Scopus
  8. D. R. Brown, M. N. Fouad, K. Basen-Engquist, and G. Tortolero-Luna, “Recruitment and retention of minority women in cancer screening, prevention, and treatment trials,” Annals of Epidemiology, vol. 10, no. 8, supplement, pp. S13–S21, 2000. View at Scopus
  9. D. W. King, T. M. Duello, P. Y. Miranda et al., “Strategies for recruitment of healthy premenopausal women into the African American nutrition for life (A NULIFE) study,” Journal of Women's Health, vol. 19, no. 5, pp. 855–862, 2010. View at Publisher · View at Google Scholar · View at Scopus
  10. B. M. Kennedy, S. Kumanyika, J. D. Ard et al., “Overall and minority-focused recruitment strategies in the PREMIER multicenter trial of lifestyle interventions for blood pressure control,” Contemporary Clinical Trials, vol. 31, no. 1, pp. 49–54, 2010. View at Publisher · View at Google Scholar · View at Scopus
  11. J. Y. Taylor, “Recruitment of three generations of african american women into genetics research,” Journal of Transcultural Nursing, vol. 20, no. 2, pp. 219–226, 2009. View at Publisher · View at Google Scholar · View at Scopus
  12. M. S. Webb, D. Seigers, and E. A. Wood, “Recruiting African American smokers into intervention research: relationships between recruitment strategies and participant characteristics,” Research in Nursing and Health, vol. 32, no. 1, pp. 86–95, 2009. View at Publisher · View at Google Scholar · View at Scopus
  13. S. Misiewicz and M. R. Winawer, “Recruitment for genetic studies of epilepsy,” Epilepsy Research, vol. 101, no. 1-2, pp. 122–128, 2012. View at Publisher · View at Google Scholar · View at Scopus
  14. V. A. Johnson, Y. M. Powell-Young, E. R. Torres, and I. J. Spruill, “A systematic review of strategies that increase the recruitment and retention of African American adults in genetic and genomic studies,” The ABNF Journal, vol. 22, no. 4, pp. 84–88, 2011. View at Scopus
  15. D. N. Cabral, A. M. Nápoles-Springer, R. Miike et al., “Population- and community-based recruitment of African Americans and Latinos: the San Francisco Bay Area lung cancer study,” American Journal of Epidemiology, vol. 158, no. 3, pp. 272–279, 2003. View at Publisher · View at Google Scholar · View at Scopus
  16. M. A. Espeland, K. Dotson, S. A. Jaramillo, et al., “Consent for genetics studies among clinical trial participants: findings from Action for Health in Diabetes (Look AHEAD),” Clinical Trials, vol. 3, no. 5, pp. 443–456, 2006. View at Publisher · View at Google Scholar
  17. R. Holliday, “Epigenetics: a historical overview,” Epigenetics, vol. 1, no. 2, pp. 76–80, 2006. View at Scopus
  18. C. A. Coyne, R. Xu, P. Raich et al., “Randomized, controlled trial of an easy-to-read informed consent statement for clinical trial participation: a study of the Eastern Cooperative Oncology Group,” Journal of Clinical Oncology, vol. 21, no. 5, pp. 836–842, 2003. View at Publisher · View at Google Scholar · View at Scopus
  19. A. P. Feinberg, “Epigenetics at the epicenter of modern medicine,” The Journal of the American Medical Association, vol. 299, no. 11, pp. 1345–1350, 2008. View at Publisher · View at Google Scholar · View at Scopus
  20. H. L. Mathews and L. W. Janusek, “Epigenetics and psychoneuroimmunology: mechanisms and models,” Brain, Behavior, and Immunity, vol. 25, no. 1, pp. 25–39, 2011. View at Publisher · View at Google Scholar · View at Scopus
  21. J. M. Ordovas and C. E. Smith, “Epigenetics and cardiovascular disease,” Nature Reviews Cardiology, vol. 7, no. 9, pp. 510–519, 2010. View at Publisher · View at Google Scholar
  22. G. Nicolosi and G. Ruivenkamp, “The epigenetic turn—some notes about the epistemological change of perspective in biosciences,” Medicine, Healthcare and Philosophy, vol. 15, no. 3, pp. 309–319, 2012. View at Publisher · View at Google Scholar · View at Scopus
  23. M. Pigliucci, “Evolution of phenotypic plasticity: where are we going now?” Trends in Ecology and Evolution, vol. 20, no. 9, pp. 481–486, 2005. View at Publisher · View at Google Scholar · View at Scopus
  24. H. E. Riden, K. N. Grooms, C. R. Clark et al., “Lessons learned obtaining informed consent in research with vulnerable populations in community health center settings,” BMC Research Notes, vol. 5, article 624, 2012. View at Publisher · View at Google Scholar
  25. C. Hughes, S. K. Peterson, A. Ramirez et al., “Minority recruitment in hereditary breast cancer research,” Cancer Epidemiology Biomarkers and Prevention, vol. 13, no. 7, pp. 1146–1155, 2004. View at Scopus
  26. H. M. Ochs-Balcom, E. M. Rodriguez, and D. O. Erwin, “Establishing a community partnership to optimize recruitment of African American pedigrees for a genetic epidemiology study,” Journal of Community Genetics, vol. 2, no. 4, pp. 223–231, 2011. View at Publisher · View at Google Scholar · View at Scopus
  27. S. C. Quinn, M. A. Garza, J. Butler et al., “Improving informed consent with minority participants: results from researcher and community surveys,” Journal of Empirical Research on Human Research Ethics, vol. 7, no. 5, pp. 44–55, 2012.
  28. J. Flory and E. Emanuel, “Interventions to improve research participants' understanding in informed consent for research: a systematic review,” Journal of the American Medical Association, vol. 292, no. 13, pp. 1593–1601, 2004. View at Publisher · View at Google Scholar · View at Scopus
  29. “Protection of human subjects; Belmont Report: notice of report for public comment,” Federal Register, vol. 44, no. 76, pp. 23191–23197, 1979.
  30. Human Subjects Research (45 CFR 46), U.S. Department of Health and Human Services, 2009.
  31. “World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects,” The Journal of the American Medical Association, vol. 284, no. 23, pp. 3043–3045, 2000.
  32. S. B. Trinidad, S. M. Fullerton, J. M. Bares, G. P. Jarvik, E. B. Larson, and W. Burke, “Informed consent in genome-scale research: what do prospective participants think?” AJOB Primary Research, vol. 3, no. 3, pp. 3–11, 2012. View at Publisher · View at Google Scholar
  33. S. Mazanec, B. Daly, N. J. Meropol, and M. Step, “Facilitating enrollment in a Cancer Registry through modified consent procedures: a pilot study,” Journal of Empirical Research on Human Research Ethics, vol. 7, no. 5, pp. 71–75, 2012. View at Publisher · View at Google Scholar
  34. K. D. Lakes, E. Vaughan, M. Jones, W. Burke, D. Baker, and J. M. Swanson, “Diverse perceptions of the informed consent process: implications for the recruitment and participation of diverse communities in the National Children's Study,” American Journal of Community Psychology, vol. 49, no. 1-2, pp. 215–232, 2012. View at Publisher · View at Google Scholar · View at Scopus
  35. K. A. Cunny and H. W. Miller, “Participation in clinical drug studies: motivations and barriers,” Clinical Therapeutics, vol. 16, no. 2, pp. 273–282, 1994. View at Scopus
  36. F. Hlubocky, N. Kass, L. Fogarty, J. Sugarman, and C. Daugherty, “A randomized trial of a CD-ROM educational intervention for advanced cancer patients (acp) enrolling in early phase trials,” EJC Supplements, vol. 1, no. 5, 2003.
  37. A. L. Dunlop, Z. C. Leroy, K. M. Logue, K. Glanz, and B. W. Dunlop, “Preconsent education about research processes improved African Americans' willingness to participate in clinical research,” Journal of Clinical Epidemiology, vol. 64, no. 8, pp. 872–877, 2011. View at Publisher · View at Google Scholar · View at Scopus
  38. J. Weston, M. Hannah, and J. Downes, “Evaluating the benefits of a patient information video during the informed consent process,” Patient Education and Counseling, vol. 30, no. 3, pp. 239–245, 1997. View at Publisher · View at Google Scholar · View at Scopus
  39. P. M. Ellis, P. N. Butow, M. H. N. Tattersall, S. M. Dunn, and N. Houssami, “Randomized clinical trials in oncology: understanding and attitudes predict willingness to participate,” Journal of Clinical Oncology, vol. 19, no. 15, pp. 3554–3561, 2001. View at Scopus
  40. E. Cohn and E. Larson, “Improving participant comprehension in the informed consent process,” Journal of Nursing Scholarship, vol. 39, no. 3, pp. 273–280, 2007. View at Publisher · View at Google Scholar · View at Scopus
  41. N. K. Aaronson, E. Visser-Pol, G. H. M. W. Leenhouts et al., “Telephone-based nursing intervention improves the effectiveness of the informed consent process in cancer clinical trials,” Journal of Clinical Oncology, vol. 14, no. 3, pp. 984–996, 1996. View at Scopus
  42. A. M. Kucia and J. D. Horowitz, “Is informed consent to clinical trials an “upside selective” process in acute coronary syndromes?” American Heart Journal, vol. 140, no. 1, pp. 94–97, 2000. View at Publisher · View at Google Scholar · View at Scopus
  43. D. W. Fitzgerald, C. Marotte, R. I. Verdier, W. D. Johnson Jr., and J. W. Pape, “Comprehension during informed consent in a less-developed country,” The Lancet, vol. 360, no. 9342, pp. 1301–1302, 2002. View at Publisher · View at Google Scholar · View at Scopus
  44. S. M. Kneipp, B. J. Lutz, and D. Means, “Reasons for enrollment, the informed consent process, and trust among low-income women participating in a community-based participatory research studys,” Public Health Nursing, vol. 26, no. 4, pp. 362–369, 2009. View at Publisher · View at Google Scholar · View at Scopus
  45. M. Jefford and R. Moore, “Improvement of informed consent and the quality of consent documents,” The Lancet Oncology, vol. 9, no. 5, pp. 485–493, 2008. View at Publisher · View at Google Scholar · View at Scopus
  46. T. C. Davis, R. F. Holcombe, H. J. Berkel, S. Pramanik, and S. G. Divers, “Informed consent for clinical trials: a comparative study of standard versus simplified forms,” Journal of the National Cancer Institute, vol. 90, no. 9, pp. 668–674, 1998. View at Scopus
  47. T. Y. Yap, A. Yamokoski, R. Noll, D. Drotar, S. Zyzanski, and E. D. Kodish, “A physician-directed intervention: teaching and measuring better informed consent,” Academic Medicine, vol. 84, no. 8, pp. 1036–1042, 2009. View at Publisher · View at Google Scholar · View at Scopus
  48. C. N. Rotimi and P. A. Marshall, “Tailoring the process of informed consent in genetic and genomic research,” Genome Medicine, vol. 2, no. 3, article 20, 2010. View at Publisher · View at Google Scholar · View at Scopus
  49. L. T. Kozlowski, G. P. Vogler, D. J. Vandenbergh, A. A. Strasser, R. J. O'Connor, and B. A. Yost, “Using a telephone survey to acquire genetic and behavioral data related to cigarette smoking in “made-anonymous” and “registry” samples,” American Journal of Epidemiology, vol. 156, no. 1, pp. 68–77, 2002. View at Publisher · View at Google Scholar · View at Scopus
  50. L. S. Engel, N. Rothman, C. Knott et al., “Factors associated with refusal to provide a buccal cell sample in the agricultural health study,” Cancer Epidemiology Biomarkers and Prevention, vol. 11, no. 5, pp. 493–496, 2002. View at Scopus
  51. G. M. McQuillan, Q. Pan, and K. S. Porter, “Consent for genetic research in a general population: an update on the National Health and Nutrition Examination Survey experience,” Genetics in Medicine, vol. 8, no. 6, pp. 354–360, 2006. View at Publisher · View at Google Scholar · View at Scopus
  52. S. G. Hendrickson, “Video recruitment of non-English-speaking participants,” Western Journal of Nursing Research, vol. 29, no. 2, pp. 232–242, 2007. View at Publisher · View at Google Scholar · View at Scopus