Literature DB >> 17018829

Public willingness to participate in and public opinions about genetic variation research: a review of the literature.

Rene Sterling1, Gail E Henderson, Giselle Corbie-Smith.   

Abstract

Scientists are turning to genetic variation research in hopes of addressing persistent racial/ethnic disparities in health. Despite ongoing controversy, the advancement of genetic variation research is likely to produce new knowledge and technologies that will substantially change the ways in which we understand and value health. They also may affect the ways in which individuals and groups organize socially, politically, and economically. Addressing concerns that may exist in different communities is vital to the scientific and ethical advancement of genetic variation research. We review empirical studies of public willingness to participate in and opinions about genetic research with particular attention to differences in consent and opinion by racial/ethnic group membership.

Mesh:

Year:  2006        PMID: 17018829      PMCID: PMC1751820          DOI: 10.2105/AJPH.2005.069286

Source DB:  PubMed          Journal:  Am J Public Health        ISSN: 0090-0036            Impact factor:   9.308


  35 in total

Review 1.  Molecular basis of ethnic differences in drug disposition and response.

Authors:  H G Xie; R B Kim; A J Wood; C M Stein
Journal:  Annu Rev Pharmacol Toxicol       Date:  2001       Impact factor: 13.820

Review 2.  Why genes don't count (for racial differences in health).

Authors:  A H Goodman
Journal:  Am J Public Health       Date:  2000-11       Impact factor: 9.308

3.  Recruiting adolescents into genetic studies of smoking behavior.

Authors:  Janet Audrain; Kenneth P Tercyak; Paula Goldman; Angelita Bush
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2002-03       Impact factor: 4.254

4.  Quantitative analysis of ethical issues in phase I trials: a survey interview of 144 advanced cancer patients.

Authors:  C K Daugherty; D M Banik; L Janish; M J Ratain
Journal:  IRB       Date:  2000 May-Jun

5.  Perceptions of genetics research as harmful to society: differences among samples of African-Americans and European-Americans.

Authors:  L Allen Furr
Journal:  Genet Test       Date:  2002

6.  Racial and ethnic disparity in participation in DNA collection at the Atlanta site of the National Birth Defects Prevention Study.

Authors:  Krista S Crider; Jennita Reefhuis; Alison Woomert; Margaret A Honein
Journal:  Am J Epidemiol       Date:  2006-07-28       Impact factor: 4.897

7.  Through the community looking glass: reevaluating the ethical and policy implications of research on adolescent risk and sociopathology.

Authors:  C B Fisher; S A Wallace
Journal:  Ethics Behav       Date:  2000

8.  Feasibility of collecting buccal cell DNA by mail in a cohort study.

Authors:  L Le Marchand; A Lum-Jones; B Saltzman; V Visaya; A M Nomura; L N Kolonel
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2001-06       Impact factor: 4.254

9.  Racial differences in factors that influence the willingness to participate in medical research studies.

Authors:  Vickie L Shavers; Charles F Lynch; Leon F Burmeister
Journal:  Ann Epidemiol       Date:  2002-05       Impact factor: 3.797

10.  Consent to the use of stored DNA for genetics research: a survey of attitudes in the Jewish population.

Authors:  M D Schwartz; K Rothenberg; L Joseph; J Benkendorf; C Lerman
Journal:  Am J Med Genet       Date:  2001-02-01
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  39 in total

1.  Biobank Recruitment: Motivations for Nonparticipation.

Authors:  Katrina A B Goddard; K Sabina Smith; Chuhe Chen; Carmit McMullen; Cheryl Johnson
Journal:  Biopreserv Biobank       Date:  2009-06       Impact factor: 2.300

2.  Engaging African-Americans about biobanks and the return of research results.

Authors:  Colin Me Halverson; Lainie Friedman Ross
Journal:  J Community Genet       Date:  2012-03-28

3.  Surrogate consent for genetic testing, the reconsent process, and consent for long-term outcomes in acute respiratory distress syndrome trials.

Authors:  Alexandra Smart; B Taylor Thompson; Dale M Needham; Ramona O Hopkins; Andre Williams; Ellen L Burnham; Marc Moss
Journal:  Am J Respir Crit Care Med       Date:  2013-12-01       Impact factor: 21.405

4.  Participation in genetic testing research varies by social group.

Authors:  Sharon Hensley Alford; Colleen M McBride; Robert J Reid; Eric B Larson; Andreas D Baxevanis; Lawrence C Brody
Journal:  Public Health Genomics       Date:  2010-03-18       Impact factor: 2.000

5.  Leaves imitate trees: Minnesota Hmong concepts of heredity and applications to genomics research.

Authors:  Kathleen A Culhane-Pera; MaiKia Moua; Pachia Vue; Kang Xiaaj; May Xia Lo; Robert J Straka
Journal:  J Community Genet       Date:  2016-11-07

6.  Diverse perceptions of the informed consent process: implications for the recruitment and participation of diverse communities in the National Children's Study.

Authors:  Kimberley D Lakes; Elaine Vaughan; Marissa Jones; Wylie Burke; Dean Baker; James M Swanson
Journal:  Am J Community Psychol       Date:  2012-03

7.  Attitudes Toward Genomic Testing and Prostate Cancer Research Among Black Men.

Authors:  Charles R Rogers; Michael J Rovito; Musse Hussein; Ogechi Jessica Obidike; Rebekah Pratt; Mark Alexander; Jerica M Berge; Marc Dall'Era; Jeffrey W Nix; Christopher Warlick
Journal:  Am J Prev Med       Date:  2018-11       Impact factor: 5.043

8.  Genetic research participation in a young adult community sample.

Authors:  Carla L Storr; Flora Or; William W Eaton; Nicholas Ialongo
Journal:  J Community Genet       Date:  2014-06-20

9.  Understanding participation by African Americans in cancer genetics research.

Authors:  Jasmine A McDonald; Frances K Barg; Benita Weathers; Carmen E Guerra; Andrea B Troxel; Susan Domchek; Deborah Bowen; Judy A Shea; Chanita Hughes Halbert
Journal:  J Natl Med Assoc       Date:  2012 Jul-Aug       Impact factor: 1.798

10.  Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?

Authors:  Susan Brown Trinidad; Stephanie M Fullerton; Julie M Bares; Gail P Jarvik; Eric B Larson; Wylie Burke
Journal:  AJOB Prim Res       Date:  2012-06-19
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