PURPOSE: Large cohort studies to investigate interactions between genes, environment, and lifestyle require large representative samples of the population. The Department of Veterans Affairs health care system is uniquely positioned to carry out such research, with a large patient population and a sophisticated system of electronic medical records. As Veterans Affairs considers establishing a large database of genetic information and medical records for research purposes, a survey of 931 Veterans Affairs patients was carried out to measure their willingness to participate, what their concerns would be, and their preferences about some aspects of study design. METHODS: A sample of veterans who receive Veterans Affairs health care was surveyed online in April and May of 2008. The proposed genomic study was described to respondents, who then were asked about their support for the study and willingness to participate, and their opinions about the study and some of its components. A descriptive analysis examined differences in attitudes among demographic groups, and whether general beliefs were associated with support or willingness to participate. RESULTS: Most respondents (83%) said the database should definitely or probably be created, and overall, 71% said they would definitely or probably participate. CONCLUSION: Majorities of Veterans Affairs health patients in a broad range of demographic groups supported the establishment of a genomic database and showed willingness to participate. Although the desire to learn about one's own health from the study was high, altruistic characteristics were strongly related to whether or not veterans would participate.
PURPOSE: Large cohort studies to investigate interactions between genes, environment, and lifestyle require large representative samples of the population. The Department of Veterans Affairs health care system is uniquely positioned to carry out such research, with a large patient population and a sophisticated system of electronic medical records. As Veterans Affairs considers establishing a large database of genetic information and medical records for research purposes, a survey of 931 Veterans Affairs patients was carried out to measure their willingness to participate, what their concerns would be, and their preferences about some aspects of study design. METHODS: A sample of veterans who receive Veterans Affairs health care was surveyed online in April and May of 2008. The proposed genomic study was described to respondents, who then were asked about their support for the study and willingness to participate, and their opinions about the study and some of its components. A descriptive analysis examined differences in attitudes among demographic groups, and whether general beliefs were associated with support or willingness to participate. RESULTS: Most respondents (83%) said the database should definitely or probably be created, and overall, 71% said they would definitely or probably participate. CONCLUSION: Majorities of Veterans Affairs health patients in a broad range of demographic groups supported the establishment of a genomic database and showed willingness to participate. Although the desire to learn about one's own health from the study was high, altruistic characteristics were strongly related to whether or not veterans would participate.
Authors: Bradley D Freeman; Carie R Kennedy; Dragana Bolcic-Jankovic; Alexander Eastman; Ellen Iverson; Erica Shehane; Aaron Celious; Jennifer Barillas; Brian Clarridge Journal: J Empir Res Hum Res Ethics Date: 2012-02 Impact factor: 1.742
Authors: Saskia C Sanderson; Kyle B Brothers; Nathaniel D Mercaldo; Ellen Wright Clayton; Armand H Matheny Antommaria; Sharon A Aufox; Murray H Brilliant; Diego Campos; David S Carrell; John Connolly; Pat Conway; Stephanie M Fullerton; Nanibaa' A Garrison; Carol R Horowitz; Gail P Jarvik; David Kaufman; Terrie E Kitchner; Rongling Li; Evette J Ludman; Catherine A McCarty; Jennifer B McCormick; Valerie D McManus; Melanie F Myers; Aaron Scrol; Janet L Williams; Martha J Shrubsole; Jonathan S Schildcrout; Maureen E Smith; Ingrid A Holm Journal: Am J Hum Genet Date: 2017-02-09 Impact factor: 11.025
Authors: Daniel B Thiel; Jodyn Platt; Tevah Platt; Susan B King; Nicole Fisher; Robert Shelton; Sharon L R Kardia Journal: Public Health Genomics Date: 2014-10-30 Impact factor: 2.000