Literature DB >> 22087353

Biobank Recruitment: Motivations for Nonparticipation.

Katrina A B Goddard1, K Sabina Smith, Chuhe Chen, Carmit McMullen, Cheryl Johnson.   

Abstract

Molecular data, essential for genomics research, can be captured more efficiently in large-scale, population-based biobanks of genetic material rather than by individual studies. Biobanks also offer improved quality and reliability of genetic samples and access through automated sample retrieval. However, it is challenging to adequately inform participants of the broad nature of the research and participation risks and benefits. In addition, recent studies suggest concerns about data sharing and return of research results, or future research topics (eg, stereotypical or potentially stigmatizing traits). We evaluated the interest in participating in a biobank and reasons for nonparticipation.

Entities:  

Year:  2009        PMID: 22087353      PMCID: PMC3205734          DOI: 10.1089/bio.2009.0006

Source DB:  PubMed          Journal:  Biopreserv Biobank        ISSN: 1947-5543            Impact factor:   2.300


  14 in total

1.  Research with stored biological samples: what do research participants want?

Authors:  Donna T Chen; Donald L Rosenstein; Palaniappan Muthappan; Susan G Hilsenbeck; Franklin G Miller; Ezekiel J Emanuel; David Wendler
Journal:  Arch Intern Med       Date:  2005-03-28

Review 2.  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

3.  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

4.  African-American attitudes regarding cancer clinical trials and research studies: results from focus group methodology.

Authors:  B L Green; E E Partridge; M N Fouad; C Kohler; E F Crayton; L Alexander
Journal:  Ethn Dis       Date:  2000       Impact factor: 1.847

5.  Attitudes and perceptions of patients towards methods of establishing a DNA biobank.

Authors:  Jill M Pulley; Margaret M Brace; Gordon R Bernard; Dan R Masys
Journal:  Cell Tissue Bank       Date:  2007-10-25       Impact factor: 1.522

6.  Asking the right questions: views on genetic variation research among black and white research participants.

Authors:  Jada Bussey-Jones; Gail Henderson; Joanne Garrett; Mairead Moloney; Connie Blumenthal; Giselle Corbie-Smith
Journal:  J Gen Intern Med       Date:  2008-12-20       Impact factor: 5.128

7.  Relationships and communication in minority participation in research: multidimensional and multidirectional.

Authors:  Giselle Corbie-Smith; Ishan Canty Williams; Connie Blumenthal; Jessica Dorrance; Sue E Estroff; Gail Henderson
Journal:  J Natl Med Assoc       Date:  2007-05       Impact factor: 1.798

8.  Subjects matter: a survey of public opinions about a large genetic cohort study.

Authors:  David Kaufman; Juli Murphy; Joan Scott; Kathy Hudson
Journal:  Genet Med       Date:  2008-11       Impact factor: 8.822

9.  Great expectations: views of genetic research participants regarding current and future genetic studies.

Authors:  Gail Henderson; Joanne Garrett; Jada Bussey-Jones; Mairead Eastin Moloney; Connie Blumenthal; Giselle Corbie-Smith
Journal:  Genet Med       Date:  2008-03       Impact factor: 8.822

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

Authors:  Geraldine M McQuillan; Kathryn S Porter; Maria Agelli; Raynard Kington
Journal:  Genet Med       Date:  2003 Jan-Feb       Impact factor: 8.822

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  21 in total

1.  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

2.  Public perspectives on biospecimen procurement: what biorepositories should consider.

Authors:  Jamie L'Heureux; Jeffrey C Murray; Elizabeth Newbury; Laura Shinkunas; Christian M Simon
Journal:  Biopreserv Biobank       Date:  2013-05-29       Impact factor: 2.300

3.  Consent to a Postmortem Tissue Procurement Study: Distinguishing Family Decision Makers' Knowledge of the Genotype-Tissue Expression Project.

Authors:  Laura A Siminoff; Maureen Wilson-Genderson; Heather M Gardiner; Maghboeba Mosavel; Kathryn Laura Barker
Journal:  Biopreserv Biobank       Date:  2018-05-10       Impact factor: 2.300

4.  Communicating With Diverse Patients About Participating in a Biobank: A Randomized Multisite Study Comparing Electronic and Face-to-Face Informed Consent Processes.

Authors:  Christian M Simon; Kai Wang; Laura A Shinkunas; Daniel T Stein; Paul Meissner; Maureen Smith; Rebecca Pentz; David W Klein
Journal:  J Empir Res Hum Res Ethics       Date:  2021-08-19       Impact factor: 1.742

5.  Potential bias in the bank: what distinguishes refusers, nonresponders and participants in a clinic-based biobank?

Authors:  J L Ridgeway; L C Han; J E Olson; K A Lackore; B A Koenig; T J Beebe; J Y Ziegenfuss
Journal:  Public Health Genomics       Date:  2013-04-12       Impact factor: 2.000

6.  Why African Americans say "No": A Study of Pharmacogenomic Research Participation.

Authors:  Mohammed Nooruddin; Courtney Scherr; Paula Friedman; Ramesh Subrahmanyam; Jeff Banagan; Diana Moreno; Myurani Sathyanarayanan; Edith Nutescu; Tharani Jeyaram; Mary Harris; Honghong Zhang; Adriana Rodriguez; Mohammed Shaazuddin; Minoli Perera; Matthew Tuck
Journal:  Ethn Dis       Date:  2020-04-02       Impact factor: 1.847

7.  Biobanking for research: a survey of patient population attitudes and understanding.

Authors:  Alanna Kulchak Rahm; Michelle Wrenn; Nikki M Carroll; Heather Spencer Feigelson
Journal:  J Community Genet       Date:  2013-04-20

8.  Barriers and Strategies to Participation in Tissue Research Among African-American Men.

Authors:  Bettina F Drake; Danielle Boyd; Kimberly Carter; Sarah Gehlert; Vetta Sanders Thompson
Journal:  J Cancer Educ       Date:  2017-03       Impact factor: 2.037

9.  Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data.

Authors:  Gaia Barazzetti; Francesca Bosisio; Daria Koutaissoff; Brenda Spencer
Journal:  Eur J Hum Genet       Date:  2020-02-21       Impact factor: 4.246

10.  Banking the brain. Addressing the ethical challenges of a mental-health biobank.

Authors:  Myanthi Amarasinghe; Hannah Tan; Samantha Larkin; Barbara Ruggeri; Sarah Lobo; Philip Brittain; Matthew Broadbent; Martin Baggaley; Gunter Schumann
Journal:  EMBO Rep       Date:  2013-04-19       Impact factor: 8.807

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