Literature DB >> 23055133

Community-based partnership to identify keys to biospecimen research participation.

Deborah O Erwin1, Kirsten Moysich, Marc T Kiviniemi, Frances G Saad-Harfouche, Warren Davis, Nikia Clark-Hargrave, Gregory L Ciupak, Christine B Ambrosone, Charles Walker.   

Abstract

Reported barriers to participation in biospecimen banking include unwillingness to undergo blood-draw procedures and concerns about confidentiality breaches, privacy, and discrimination. The study identified key factors and influential perspectives to address these barriers and inform methods to improve recruitment and research participation among racially diverse community. A mixed-methods, community-based participatory research orientation was used to collect formative findings to develop a pilot intervention. Methods included nine key informant interviews, three focus groups (n = 26), and 64 community surveys. Findings showed: (1) increased concern of exploitation by pharmaceutical company sponsor; (2) varied perceptions about monetary compensation for research participation; and (3) willingness to participate in a biospecimen banking study by more than 30% of the people in the community survey. Research participation and biospecimen donation may be influenced by who is sponsoring a study. Monetary incentives for study participation may be more important for African American than White participants.

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Mesh:

Year:  2013        PMID: 23055133      PMCID: PMC3553248          DOI: 10.1007/s13187-012-0421-5

Source DB:  PubMed          Journal:  J Cancer Educ        ISSN: 0885-8195            Impact factor:   2.037


  12 in total

1.  Multi-site implementation of health education programs for Latinas.

Authors:  Nora R Sudarsan; Lina Jandorf; Deborah O Erwin
Journal:  J Community Health       Date:  2011-04

2.  The use of an electronic audience response system for data collection.

Authors:  Eduard J Gamito; Linda Burhansstipanov; Linda U Krebs; Lynne Bemis; Alice Bradley
Journal:  J Cancer Educ       Date:  2005       Impact factor: 2.037

3.  Informed consent in biobank research: a deliberative approach to the debate.

Authors:  David M Secko; Nina Preto; Simon Niemeyer; Michael M Burgess
Journal:  Soc Sci Med       Date:  2008-12-16       Impact factor: 4.634

4.  Public perspectives on informed consent for biobanking.

Authors:  Juli Murphy; Joan Scott; David Kaufman; Gail Geller; Lisa LeRoy; Kathy Hudson
Journal:  Am J Public Health       Date:  2009-10-15       Impact factor: 9.308

5.  Achieving online consent to participation in large-scale gene-environment studies: a tangible destination.

Authors:  Fiona Wood; Jenny Kowalczuk; Glyn Elwyn; Clive Mitchell; John Gallacher
Journal:  J Med Ethics       Date:  2011-04-08       Impact factor: 2.903

6.  Formative research on perceptions of biobanking: what community members think.

Authors:  John S Luque; Gwendolyn P Quinn; Francisco A Montel-Ishino; Mariana Arevalo; Shalanda A Bynum; Shalewa Noel-Thomas; Kristen J Wells; Clement K Gwede; Cathy D Meade
Journal:  J Cancer Educ       Date:  2012-03       Impact factor: 2.037

7.  Establishing a cancer center data bank and biorepository for multidisciplinary research.

Authors:  Christine B Ambrosone; Mary K Nesline; Warren Davis
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2006-09       Impact factor: 4.254

8.  Studying genetic research participants: lessons from the "Learning About Research in North Carolina" study.

Authors:  Giselle Corbie-Smith; Connie Blumenthal; Gail Henderson; Joanne Garrett; Jada Bussey-Jones; Mairead Moloney; Robert S Sandler; Stacey W Lloyd; Jessica Dorrance; Jane Darter
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2008-08       Impact factor: 4.254

9.  Factors that influence characteristics of genetic biobanks.

Authors:  Jennifer E Sanner; Lorraine Frazier
Journal:  J Nurs Scholarsh       Date:  2007       Impact factor: 3.176

10.  Informed consent for biorepositories: assessing prospective participants' understanding and opinions.

Authors:  Laura M Beskow; Elizabeth Dean
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2008-06       Impact factor: 4.254

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  21 in total

1.  Utilizing Focus Groups with Potential Participants and Their Parents: An Approach to Inform Study Design in a Large Clinical Trial.

Authors:  Sandeep Kadimpati; Jennifer B McCormick; Yichen Chiu; Ashley B Parker; Aliya Z Iftikhar; Randall P Flick; David O Warner
Journal:  AJOB Empir Bioeth       Date:  2014-01-01

2.  Participant-Centered Strategies for Overcoming Barriers to Biospecimen Collection among Spanish-Speaking Latina Breast Cancer Survivors.

Authors:  Cathy Samayoa; Jasmine Santoyo-Olsson; Cristian Escalera; Anita L Stewart; Carmen Ortiz; Leticia Márquez-Magaña; Aday Urias; Nayeli Gonzalez; Silvia A Cervantes; Alma Torres-Nguyen; Lorenia Parada-Ampudia; Anna M Nápoles
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2020-03       Impact factor: 4.254

3.  Knowledge and willingness to provide research biospecimens among foreign-born Latinos using safety-net clinics.

Authors:  Christopher A Loffredo; Gheorghe Luta; Sherrie Wallington; Solomon B Makgoeng; Claire Selsky; Jeanne S Mandelblatt; Lucile L Adams-Campbell
Journal:  J Community Health       Date:  2013-08

4.  Contrasting the ethical perspectives of biospecimen research among individuals with familial risk for hereditary cancer and biomedical researchers: implications for researcher training.

Authors:  Gwendolyn P Quinn; Alexis Koskan; Ivana Sehovic; Tuya Pal; Cathy Meade; Clement K Gwede
Journal:  Genet Test Mol Biomarkers       Date:  2014-04-30

5.  Factors associated with willingness to participate in biospecimen research among Chinese Americans.

Authors:  Wanzhen Gao; Grace X Ma; Yin Tan; Carolyn Fang; JoEllen Weaver; Ming Jin; Philip Lai
Journal:  Biopreserv Biobank       Date:  2014-04       Impact factor: 2.300

6.  Development and validation of the biobanking attitudes and knowledge survey-Spanish (BANKS-SP).

Authors:  Mariana Arevalo; Paul B Jacobsen; Clement K Gwede; Cathy D Meade; Gwendolyn P Quinn; John S Luque; Gloria San Miguel; Dale Watson; Kristen J Wells
Journal:  J Community Genet       Date:  2016-09-15

7.  Engaging diverse populations in biospecimen donation: results from the Hoy y Mañana study.

Authors:  Elisa M Rodriguez; Frances G Saad-Harfouche; Austin Miller; Martin C Mahoney; Christine B Ambrosone; Carl D Morrison; Willie Underwood; Deborah O Erwin
Journal:  J Community Genet       Date:  2016-08-03

8.  Involving disparate populations in clinical trials and biobanking protocols: experiences from the community network program centers.

Authors:  Beti Thompson; James R Hébert
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2014-03       Impact factor: 4.254

9.  Impact of a biospecimen collection seminar on willingness to donate biospecimens among Chinese Americans: results from a randomized, controlled community-based trial.

Authors:  Elisa K Tong; Lei-Chun Fung; Susan L Stewart; Debora A Paterniti; Julie H T Dang; Moon S Chen
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2014-03       Impact factor: 4.254

10.  Introducing Biospecimen Science to Communities: Tools from Two Cities.

Authors:  Cathy D Meade; Elisa M Rodriguez; Mariana Arevalo; John S Luque; Narseary Harris; Gloria San Miguel; Clement K Gwede; Deborah O Erwin
Journal:  Prog Community Health Partnersh       Date:  2015
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