Literature DB >> 28689351

Leveraging community-based participatory research capacity to recruit Pacific Islanders into a genetics study.

Pearl A McElfish1, Marie-Rachelle Narcisse2, Christopher R Long2, Britni L Ayers2, Nicola L Hawley3, Nia Aitaoto2, Sheldon Riklon2, L Joseph Su4, Shumona Z Ima2, Ralph O Wilmoth2, Thomas K Schulz5, Susan Kadlubar6.   

Abstract

Pacific Islanders face many health disparities, including higher rates of cardiovascular disease, cancer, obesity, and diabetes compared to other racial and ethnic groups. Specifically, the Marshallese population suffers disproportionately from type 2 diabetes, with rates 400% higher than the general US population. As part of an ongoing community-based participatory research (CBPR) partnership, 148 participants were recruited for a study examining genetic variants to better understand diabetes. Participants provided a saliva specimen in an Oragene® DNA self-collection kit. Each participant provided approximately 2 mL volume of saliva and was asked qualitative questions about their experience. The study yielded a recruitment rate of 95.5%. Among the 148 persons who participated, 143 (96.6%) agreed to be contacted for future studies; 142 (95.9%) agreed to have their samples used for future IRB-approved studies; and 144 (97.3%) gave permission for the researchers to link information from this study to other studies in which they had participated. Qualitative responses showed that the majority of participants were willing to participate because of their desire to contribute to the health of their community and to understand the genetic influence related to diabetes. This study demonstrates willingness to participate in genetic research among Marshallese living in Arkansas. Willingness was likely enhanced because the feasibility study was part of a larger CBPR effort. This study is important to community stakeholders who have voiced a desire to collaboratively conduct genetic research related to diabetes, perinatal outcomes, and cancer.

Entities:  

Keywords:  Community-based participatory research; Diabetes; Genetics; Pacific Islanders

Year:  2017        PMID: 28689351      PMCID: PMC5614883          DOI: 10.1007/s12687-017-0313-9

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


  63 in total

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Authors:  Pearl Anna McElfish; Lisa Smith; Karra Sparks; Williamina Ioanna Bing; Sharlynn Lang; Amber Estes; Michael Stephens
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Review 3.  Best Practices for Community-Engaged Research with Pacific Islander Communities in the US and USAPI: A Scoping Review.

Authors:  Pearl A McElfish; Karen Yeary; Imi A Sinclair; Susan Steelman; Monica K Esquivel; Nia Aitaoto; Keawe'aimoku Kaholokula; Rachel S Purvis; Britni L Ayers
Journal:  J Health Care Poor Underserved       Date:  2019

4.  Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality.

Authors:  Oliver Feeney; Pascal Borry; Heike Felzmann; Lucia Galvagni; Ari Haukkala; Michele Loi; Salvör Nordal; Vojin Rakic; Brígida Riso; Sigrid Sterckx; Danya Vears
Journal:  J Community Genet       Date:  2017-10-24

5.  Eliciting culturally and medically informative family health histories from Marshallese patients living in the United States.

Authors:  Karli Blocker; Henry Gene Hallford; Pearl McElfish; Noelle R Danylchuk; Lori Williamson Dean
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6.  Study protocol for family model diabetes self-management education with Marshallese participants in faith-based organizations.

Authors:  Pearl A McElfish; Sheldon Riklon; Rachel S Purvis; Christopher R Long; Holly C Felix; Jonell S Hudson; Derek Alik; Joseph Henske; Dinesh Edem; Gail O'Connor; Janine Boyers; Brett Rowland; James P Selig
Journal:  Contemp Clin Trials Commun       Date:  2022-09-20

7.  Genomics for all in the 21st century?

Authors:  Martina C Cornel; Vence L Bonham
Journal:  J Community Genet       Date:  2017-09-14

8.  Health Research Participation, Opportunity, and Willingness Among Minority and Rural Communities of Arkansas.

Authors:  Pearl A McElfish; Christopher R Long; James P Selig; Brett Rowland; Rachel S Purvis; Laura James; Angel Holland; Holly C Felix; Marie-Rachelle Narcisse
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9.  Preterm birth among Pacific Islander women and related perinatal outcomes: a scoping review protocol.

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  9 in total

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