Literature DB >> 27488840

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

Elisa M Rodriguez1, Frances G Saad-Harfouche2, Austin Miller3, Martin C Mahoney4, Christine B Ambrosone2, Carl D Morrison5, Willie Underwood6, Deborah O Erwin2.   

Abstract

The disproportionately lower number of certain subpopulations participating in clinical and prevention research has a significant impact on the representativeness of scientific outcomes. The Hoy y Mañana program (Today and Tomorrow) was developed as a culturally and linguistically appropriate education program to engage diverse medically underserved populations without a cancer diagnosis in biospecimen donation for cancer genomic research. Participants were recruited to in-depth community-based educational programs (∼45-60-min duration) or during open events in the community based on a convenience sampling. Programs were offered in English and Spanish. An on-site mobile lab along with phlebotomy services was provided at all programs and events to collect participant biospecimen (blood) samples to be stored at the cancer center's Data Bank and BioRepository (DBBR). The distributions for education, race/ethnicity, and gender were similar across the event types. Most of the participants were women. The analysis sample had a total of 311 participants, including 231 from the education programs and 80 participants from open events. Those with a higher education (college or more) were more likely to donate than those with a lower level of education (high school or less) (45 vs 28 %, p = 0.007). Actual donation status was not associated with age or race. Willingness to donate a biospecimen and biospecimen donation rates followed the same pattern with respect to participants with higher levels of education being more willing to donate and giving a blood donation. Prior to outreach efforts, less than 6 % of specimens donated to DBBR from healthy/non-cancer patients were from minority participants.

Entities:  

Keywords:  African American; Biospecimen donation; Community outreach; Education; Hispanic

Year:  2016        PMID: 27488840      PMCID: PMC5138162          DOI: 10.1007/s12687-016-0275-3

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  15 in total

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Journal:  Cancer       Date:  2008-01-15       Impact factor: 6.860

2.  Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community.

Authors:  Chiranjeev Dash; Sherrie F Wallington; Sherieda Muthra; Everett Dodson; Jeanne Mandelblatt; Lucile L Adams-Campbell
Journal:  J Community Genet       Date:  2014-04-26

3.  Culturally appropriate education intervention on biospecimen research participation among Chinese Americans.

Authors:  Wanzhen Gao; Grace X Ma; Yin Tan; Carolyn Fang; Joellen Weaver; Ming Jin; Philip Lai; Andrew K Godwin
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2014-03       Impact factor: 4.254

4.  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

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

Authors:  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
Journal:  J Cancer Educ       Date:  2013-03       Impact factor: 2.037

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

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Review 8.  Biobanks and personalized medicine.

Authors:  J E Olson; S J Bielinski; E Ryu; E M Winkler; P Y Takahashi; J Pathak; J R Cerhan
Journal:  Clin Genet       Date:  2014-03-27       Impact factor: 4.438

9.  Pilot intervention outcomes of an educational program for biospecimen research participation.

Authors:  Marc T Kiviniemi; Frances G Saad-Harfouche; Gregory L Ciupak; Warren Davis; Kirsten Moysich; Nikia Clark Hargrave; Christine B Ambrosone; Charles Walker; Deborah O Erwin
Journal:  J Cancer Educ       Date:  2013-03       Impact factor: 2.037

10.  Unexpected findings in the exploration of African American underrepresentation in biospecimen collection and biobanks.

Authors:  Nao Hagiwara; Lisa Berry-Bobovski; Carie Francis; Lauren Ramsey; Robert A Chapman; Terrance L Albrecht
Journal:  J Cancer Educ       Date:  2014-09       Impact factor: 2.037

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1.  Leaves imitate trees: Minnesota Hmong concepts of heredity and applications to genomics research.

Authors:  Kathleen A Culhane-Pera; MaiKia Moua; Pachia Vue; Kang Xiaaj; May Xia Lo; Robert J Straka
Journal:  J Community Genet       Date:  2016-11-07

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.  Time, trust, and transparency: Lessons learned from collecting blood biospecimens for cancer research from the Asian American community.

Authors:  Julie H T Dang; Moon S Chen
Journal:  Cancer       Date:  2018-04-01       Impact factor: 6.860

4.  Enrollment and biospecimen collection in a multiethnic family cohort: the Northern California site of the Breast Cancer Family Registry.

Authors:  Esther M John; Meera Sangaramoorthy; Jocelyn Koo; Alice S Whittemore; Dee W West
Journal:  Cancer Causes Control       Date:  2019-03-05       Impact factor: 2.506

5.  Impact of education on APOL1 testing attitudes among prospective living kidney donors.

Authors:  Jordan G Nestor; Amber J Li; Kristen L King; S Ali Husain; Tristan J McIntosh; Deirdre Sawinski; Ana S Iltis; Melody S Goodman; Heidi A Walsh; James M DuBois; Sumit Mohan
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Review 6.  Project PLACE: Enhancing community and academic partnerships to describe and address health disparities.

Authors:  Nadine J Barrett; Kearston L Ingraham; Kenisha Bethea; Pao Hwa-Lin; Maritza Chirinos; Laura J Fish; Schenita Randolph; Ping Zhang; Peter Le; Demetrius Harvey; Ronald L Godbee; Steven R Patierno
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7.  Factors associated with biomedical research participation within community-based samples across 3 National Cancer Institute-designated cancer centers.

Authors:  Nadine J Barrett; Elisa M Rodriguez; Ronaldo Iachan; Terry Hyslop; Kearston L Ingraham; Gem M Le; Kelly Martin; Rodney C Haring; Natalie A Rivadeneira; Deborah O Erwin; Laura J Fish; Deirdre Middleton; Robert A Hiatt; Steven R Patierno; Urmimala Sarkar; Elizabeth A Gage-Bouchard
Journal:  Cancer       Date:  2020-01-07       Impact factor: 6.860

8.  A pilot study of a culturally-appropriate, educational intervention to increase participation in cancer clinical trials among African Americans and Latinos.

Authors:  Jennifer Cunningham-Erves; Tilicia L Mayo-Gamble; Pamela C Hull; Tao Lu; Claudia Barajas; Caree R McAfee; Maureen Sanderson; Juan R Canedo; Katina Beard; Consuelo H Wilkins
Journal:  Cancer Causes Control       Date:  2021-05-27       Impact factor: 2.532

9.  Willingness of a Multiethnic Immigrant Population to Donate Biospecimens for Research Purposes.

Authors:  Amy Raines-Milenkov; Martha Felini; Eva Baker; Rushil Acharya; Elvis Longanga Diese; Sara Onsa; Hlawn Iang; Anab Abdi; Idara Akpan; Arbaz Hussain; Teresa Wagner; Jonathan Hughes
Journal:  J Immigr Minor Health       Date:  2021-07-26

10.  Analysis of Racial/Ethnic Representation in Select Basic and Applied Cancer Research Studies.

Authors:  Santiago Guerrero; Andrés López-Cortés; Alberto Indacochea; Jennyfer M García-Cárdenas; Ana Karina Zambrano; Alejandro Cabrera-Andrade; Patricia Guevara-Ramírez; Diana Abigail González; Paola E Leone; César Paz-Y-Miño
Journal:  Sci Rep       Date:  2018-09-18       Impact factor: 4.379

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