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Erschienen in: Journal of Cancer Education 1/2013

01.03.2013

Community-Based Partnership to Identify Keys to Biospecimen Research Participation

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

Erschienen in: Journal of Cancer Education | Ausgabe 1/2013

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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.
Fußnoten
1
Love Canal was an unfinished canal and land region in the Niagara Falls NY area that was used to dump an estimated 22,000 tons of mixed chemical and hazardous wastes from 1942 to 1953, then covered with dirt and declared safe. This land was sold in 1955 to construct an elementary school and housing development. Unusually heavy rain and snowfall in 1975 and 1976 caused the previously buried biohazardous chemicals and waste to permeate the soil and drinking water in the area, and in 1978 it was declared a threat by the New York Department of Health Commissioner. Families were evacuated, lawsuits were subsequently filed, and subsequent chromosome damage in residents was discovered.
 
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Metadaten
Titel
Community-Based Partnership to Identify Keys to Biospecimen Research Participation
verfasst von
Deborah O. Erwin
Kirsten Moysich
Marc T. Kiviniemi
Frances G. Saad-Harfouche
Warren Davis
Nikia Clark-Hargrave
Gregory L. Ciupak
Christine B. Ambrosone
Charles Walker
Publikationsdatum
01.03.2013
Verlag
Springer-Verlag
Erschienen in
Journal of Cancer Education / Ausgabe 1/2013
Print ISSN: 0885-8195
Elektronische ISSN: 1543-0154
DOI
https://doi.org/10.1007/s13187-012-0421-5

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