Community-Based Dialogue: Engaging Communities of Color in the United States' Genetics Policy Conversation

被引:29
作者
Bonham, Vence L. [1 ]
Citrin, Toby [2 ]
Modell, Stephen M. [2 ,3 ]
Franklin, Tene Hamilton [4 ,5 ]
Bleicher, Esther W. B.
Fleck, Leonard M. [6 ]
机构
[1] NHGRI, NIH, Div Intramural Res, Social & Behav Res Branch, Bethesda, MD USA
[2] Univ Michigan, Sch Publ Hlth, Ctr Publ Hlth & Community Genom, Ann Arbor, MI 48109 USA
[3] Univ Michigan, Sch Publ Hlth, Dept Hlth Policy & Management, Ann Arbor, MI 48109 USA
[4] Meharry Med Coll, Dept Internal Med, Nashville, TN USA
[5] Meharry Med Coll, Dept Obstet & Gynecol, Nashville, TN USA
[6] Michigan State Univ, Ctr Eth & Humanities Life Sci, E Lansing, MI 48824 USA
关键词
HEALTH DISPARITIES; AFRICAN-AMERICANS; ETHNIC CATEGORIES; BLACK PATIENTS; HEART-FAILURE; GENOME ERA; RACE; GENES; RISK; ANCESTRY;
D O I
10.1215/03616878-2009-009
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Engaging communities of color in the genetics public policy conversation is important for the translation of genetics research into strategies aimed at improving the health of all. Implementing model public participation and consultation processes can be informed by the Communities of Color Genetics Policy Project, which engaged individuals from African American and Latino communities of diverse socioeconomic levels in the process of "rational democratic deliberation" on ethical and policy issues stretching from genome research to privacy and discrimination concerns to public education. The results of the study included the development of a participatory framework based on a combination of the theory of democratic deliberation and the community-based public health model which we describe as "community-based dialogue."
引用
收藏
页码:325 / 359
页数:35
相关论文
共 74 条
[1]   Genes, race, and psychology in the genome era - An introduction [J].
Anderson, NB ;
Nickerson, KJ .
AMERICAN PSYCHOLOGIST, 2005, 60 (01) :5-8
[2]  
[Anonymous], 2002, The Future of the Public's Health in the 21st Century
[3]  
[Anonymous], J AM MED ASS
[4]  
[Anonymous], 1998, CONTROLLING HUMAN HE
[5]  
[Anonymous], 2001, DESIGNING DEMOCRACY
[6]   Foraminifera and environmental micropaleontology [J].
Barbieri, Roberto ;
Hohenegger, Johann ;
Pugliese, Nevio .
MARINE MICROPALEONTOLOGY, 2006, 61 (1-3) :1-3
[7]   BiDil for heart failure in black patients: Implications of the U.S. Food and Drug Administration approval [J].
Bibbins-Domingo, Kirsten ;
Fernandez, Alicia .
ANNALS OF INTERNAL MEDICINE, 2007, 146 (01) :52-W8
[8]   The science and business of genetic ancestry testing [J].
Bolnick, Deborah A. ;
Fullwiley, Duana ;
Duster, Troy ;
Cooper, Richard S. ;
Fujimura, Joan H. ;
Kahn, Jonathan ;
Kaufman, Jay S. ;
Marks, Jonathan ;
Morning, Ann ;
Nelson, Alondra ;
Ossorio, Pilar ;
Reardon, Jenny ;
Reverby, Susan M. ;
TallBear, Kimberly .
SCIENCE, 2007, 318 (5849) :399-400
[9]   Race and ethnicity in the genome era - The complexity of the constructs [J].
Bonham, VL ;
Warshauer-Baker, E ;
Collins, FS .
AMERICAN PSYCHOLOGIST, 2005, 60 (01) :9-15
[10]  
Brandt AllanM., 2000, TUSKEGEES TRUTHS, P15