Literature DB >> 12544474

Consent for genetic research in a general population: the NHANES experience.

Geraldine M McQuillan1, Kathryn S Porter, Maria Agelli, Raynard Kington.   

Abstract

PURPOSE: To determine the sociodemographic factors associated with consent for storage of DNA for future genetic research.
METHODS: Analysis of the characteristics of consenting individuals participating in the National Health and Nutrition Examination Survey, a nationally representative survey of the US household population.
RESULTS: In 1999, 84% (95% confidence interval 82.4-85.6) of eligible participants consented to have their blood samples included in a national repository for genetic research. In 2000, 85.3% (95% confidence interval 84.0-86.6) consented. Females and black participants in both years were least likely to consent (1999, 82.2% and 73.2%; 2000, 83.6% and 81.3%, respectively). An assessment by logistic regression demonstrated that in both years only non-Hispanic black race/ethnicity was a significant independent predictor for not consenting to future genetic research.
CONCLUSION: Although non-Hispanic black individuals have overall response rates similar to those of the other racial/ethnic groups, they are less likely to agree to have a blood sample saved for future genetic research. In balance, however, these findings demonstrate wide acceptance among survey participants for allowing storage of specimens for future genetic research across many demographic variables.

Entities:  

Keywords:  Biomedical and Behavioral Research; Empirical Approach; Genetics and Reproduction

Mesh:

Substances:

Year:  2003        PMID: 12544474     DOI: 10.1097/00125817-200301000-00006

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  64 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.  Hypothetical and factual willingness to participate in biobank research.

Authors:  Linus Johnsson; Gert Helgesson; Thorunn Rafnar; Ingibjorg Halldorsdottir; Kee-Seng Chia; Stefan Eriksson; Mats G Hansson
Journal:  Eur J Hum Genet       Date:  2010-07-21       Impact factor: 4.246

4.  Sex Differences in Willingness to Participate in Research Based on Study Risk Level Among a Community Sample of African Americans in North Central Florida.

Authors:  Ayodeji Otufowora; Yiyang Liu; Henry Young; Kathleen L Egan; Deepthi S Varma; Catherine W Striley; Linda B Cottler
Journal:  J Immigr Minor Health       Date:  2021-02

Review 5.  Public willingness to participate in and public opinions about genetic variation research: a review of the literature.

Authors:  Rene Sterling; Gail E Henderson; Giselle Corbie-Smith
Journal:  Am J Public Health       Date:  2006-10-03       Impact factor: 9.308

Review 6.  One-time general consent for research on biological samples.

Authors:  David Wendler
Journal:  BMJ       Date:  2006-03-04

7.  Ethical and practical challenges to studying patients who opt out of large-scale biorepository research.

Authors:  S Trent Rosenbloom; Jennifer L Madison; Kyle B Brothers; Erica A Bowton; Ellen Wright Clayton; Bradley A Malin; Dan M Roden; Jill Pulley
Journal:  J Am Med Inform Assoc       Date:  2013-07-25       Impact factor: 4.497

8.  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

9.  Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.

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

10.  Public perspectives on returning genetics and genomics research results.

Authors:  J O'Daniel; S B Haga
Journal:  Public Health Genomics       Date:  2011-05-07       Impact factor: 2.000

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.