Engaging diverse populations about biospecimen donation for cancer research

Julie H T Dang, Elisa M. Rodriguez, John S. Luque, Deborah O. Erwin, Cathy D. Meade, Moon S Chen

Research output: Contribution to journalArticle

33 Citations (Scopus)

Abstract

Clinical research increasingly relies upon the availability of appropriate genetic materials; however, the proportion of biospecimens from racial/ethnic minority patients and healthy controls are underrepresented, which preclude equitable research across all patient groups for cancer treatment. National Cancer Institute-funded Community Network Program Centers in California, Florida, and New York collaborated with local community partners to conduct three independent formative research studies with diverse (African American, Asian American, Hispanic, and White) participants to explore their knowledge, attitudes, and beliefs about biobanking, and their experiences with the donation of biospecimens. Our findings demonstrated similarities in overall low knowledge and understanding about the use of biospecimens for research. This was exacerbated for non-English speakers. Racial and ethnic groups differed with regard to a number of factors that are obstacles for participation, e.g., continuing medical mistrust (African Americans), lack of benefit (Hispanics), apprehension about the physical toll of donating (Vietnamese), usage of biospecimen for research (Hmong and Chinese), and suspicion of exploitation by corporate entities (Whites). However, participants uniformly reported general interest and willingness to participate in biobanking for altruistic purposes, particularly to benefit future generations. This interest was framed with a strong admonition that donations should be accompanied by transparency about study sponsorship and ownership, distribution and use of biospecimens, and study information that fit participants’ backgrounds and experiences. This cross-cultural regional analysis offers significant insights into the similarities and variations in opinions and perceptions about biobanking and the collection of biospecimens for use in cancer research.

Original languageEnglish (US)
Pages (from-to)313-327
Number of pages15
JournalJournal of Community Genetics
Volume5
Issue number4
DOIs
StatePublished - Oct 1 2014

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Research
Population
Neoplasms
Hispanic Americans
African Americans
Community Networks
Asian Americans
National Cancer Institute (U.S.)
Ownership
Social Responsibility
Ethnic Groups
Genes
Therapeutics

Keywords

  • African Americans
  • Asian Americans
  • Biobanking
  • Biospecimens
  • Hispanics
  • Medically underserved

ASJC Scopus subject areas

  • Genetics(clinical)
  • Public Health, Environmental and Occupational Health
  • Epidemiology

Cite this

Engaging diverse populations about biospecimen donation for cancer research. / Dang, Julie H T; Rodriguez, Elisa M.; Luque, John S.; Erwin, Deborah O.; Meade, Cathy D.; Chen, Moon S.

In: Journal of Community Genetics, Vol. 5, No. 4, 01.10.2014, p. 313-327.

Research output: Contribution to journalArticle

Dang, Julie H T ; Rodriguez, Elisa M. ; Luque, John S. ; Erwin, Deborah O. ; Meade, Cathy D. ; Chen, Moon S. / Engaging diverse populations about biospecimen donation for cancer research. In: Journal of Community Genetics. 2014 ; Vol. 5, No. 4. pp. 313-327.
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