Literature DB >> 19451407

Community-based dialogue: engaging communities of color in the United states' genetics policy conversation.

Vence L Bonham1, Toby Citrin, Stephen M Modell, Tené Hamilton Franklin, Esther W B Bleicher, Leonard M Fleck.   

Abstract

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."

Entities:  

Mesh:

Year:  2009        PMID: 19451407      PMCID: PMC2800818          DOI: 10.1215/03616878-2009-009

Source DB:  PubMed          Journal:  J Health Polit Policy Law        ISSN: 0361-6878            Impact factor:   2.265


  38 in total

Review 1.  Biofantasies: genetics and medicine in the print news media.

Authors:  A Petersen
Journal:  Soc Sci Med       Date:  2001-04       Impact factor: 4.634

2.  Community responsibility and the development of Oregon's health care priorities.

Authors:  Michael J Garland; Romana Hasnain
Journal:  Bus Prof Ethics J       Date:  1990 Fall-Winter

3.  Genetic structure of human populations.

Authors:  Noah A Rosenberg; Jonathan K Pritchard; James L Weber; Howard M Cann; Kenneth K Kidd; Lev A Zhivotovsky; Marcus W Feldman
Journal:  Science       Date:  2002-12-20       Impact factor: 47.728

4.  Race and genomics.

Authors:  Richard S Cooper; Jay S Kaufman; Ryk Ward
Journal:  N Engl J Med       Date:  2003-03-20       Impact factor: 91.245

5.  Breakthrough of the year. Human genetic variation.

Authors:  Elizabeth Pennisi
Journal:  Science       Date:  2007-12-21       Impact factor: 47.728

6.  Genetics. The science and business of genetic ancestry testing.

Authors:  Deborah A Bolnick; Duana Fullwiley; Troy Duster; Richard S Cooper; Joan H Fujimura; Jonathan Kahn; Jay S Kaufman; Jonathan Marks; Ann Morning; Alondra Nelson; Pilar Ossorio; Jenny Reardon; Susan M Reverby; Kimberly TallBear
Journal:  Science       Date:  2007-10-19       Impact factor: 47.728

Review 7.  Investigating the phenotypes and genotypes of breast cancer in women with African ancestry: the need for more genetic epidemiology.

Authors:  Awori J Hayanga; Lisa A Newman
Journal:  Surg Clin North Am       Date:  2007-04       Impact factor: 2.741

8.  "What are they going to do with the information?" Latino/Latina and African American perspectives on the Human Genome Project.

Authors:  Amy Schulz; Cleopatra Caldwell; Sarah Foster
Journal:  Health Educ Behav       Date:  2003-04

9.  How much can a large population study on genes, environments, their interactions and common diseases contribute to the health of the American people?

Authors:  Claudia Chaufan
Journal:  Soc Sci Med       Date:  2007-07-05       Impact factor: 4.634

10.  Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinion.

Authors:  David Kaufman; Gail Geller; Lisa Leroy; Juli Murphy; Joan Scott; Kathy Hudson
Journal:  Am J Med Genet C Semin Med Genet       Date:  2008-02-15       Impact factor: 3.908

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  19 in total

1.  Community engagement about genetic variation research.

Authors:  Sharon F Terry; Kurt D Christensen; Susan Metosky; Gayle Rudofsky; Kathleen P Deignan; Hulda Martinez; Penelope Johnson-Moore; Toby Citrin
Journal:  Popul Health Manag       Date:  2011-08-04       Impact factor: 2.459

2.  Self-reported race and ethnicity of US biobank participants compared to the US Census.

Authors:  Elizabeth Gross Cohn; Nalo Hamilton; Elaine L Larson; Janet K Williams
Journal:  J Community Genet       Date:  2017-06-16

Review 3.  The role of religious values in decisions about genetics and the public's health.

Authors:  Stephen M Modell; Toby Citrin; Susan B King; Sharon L R Kardia
Journal:  J Relig Health       Date:  2014-06

Review 4.  Within and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boards.

Authors:  Hojjat Soofi; Evert van Leeuwen
Journal:  J Community Genet       Date:  2016-08-05

5.  Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago.

Authors:  Amy A Lemke; Colin Halverson; Lainie Friedman Ross
Journal:  Am J Med Genet A       Date:  2012-03-21       Impact factor: 2.802

6.  Deliberations with American Indian and Alaska Native People about the Ethics of Genomics: An Adapted Model of Deliberation Used with Three Tribal Communities in the United States.

Authors:  Erika Blacksher; Vanessa Y Hiratsuka; Jessica W Blanchard; Justin R Lund; Justin Reedy; Julie A Beans; Bobby Saunkeah; Micheal Peercy; Christie Byars; Joseph Yracheta; Krystal S Tsosie; Marcia O'Leary; Guthrie Ducheneaux; Paul G Spicer
Journal:  AJOB Empir Bioeth       Date:  2021-06-14

7.  Community leaders' perspectives on engaging African Americans in biobanks and other human genetics initiatives.

Authors:  Aaron G Buseh; Patricia E Stevens; Sandra Millon-Underwood; Leolia Townsend; Sheryl T Kelber
Journal:  J Community Genet       Date:  2013-06-29

8.  Participatory Genomic Testing Can Effectively Disseminate Cardiovascular Pharmacogenomics Concepts within Federally Qualified Health Centers: A Feasibility Study.

Authors:  Amber Johnson; Stephen Broughton; Lisa Aponte-Soto; Karriem Watson; Carla Da Goia Pinto; Philip Empey; Steven Reis; Robert Winn; Mylynda Massart
Journal:  Ethn Dis       Date:  2020-04-02       Impact factor: 1.847

9.  The Meaning of Informed Consent: Genome Editing Clinical Trials for Sickle Cell Disease.

Authors:  Stacy Desine; Brittany M Hollister; Khadijah E Abdallah; Anitra Persaud; Sara Chandros Hull; Vence L Bonham
Journal:  AJOB Empir Bioeth       Date:  2020-10-12

10.  Risk, reward, and the double-edged sword: perspectives on pharmacogenetic research and clinical testing among Alaska Native people.

Authors:  Jennifer L Shaw; Renee Robinson; Helene Starks; Wylie Burke; Denise A Dillard
Journal:  Am J Public Health       Date:  2013-10-17       Impact factor: 9.308

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