Literature DB >> 25112899

"It takes a village": multilevel approaches to recruit African Americans and their families for genetic research.

Heather M Ochs-Balcom1, Lina Jandorf, Youjin Wang, Detric Johnson, Veronica Meadows Ray, Mattye J Willis, Deborah O Erwin.   

Abstract

One barrier to searching for novel mutations in African American families with breast cancer is the challenge of effectively recruiting families-affected and non-affected relatives-into genetic research studies. Using a community-based participatory research (CBPR) orientation, we incorporated several evidence-based approaches through an iterative fashion to recruit for a breast cancer genetic epidemiology study in African Americans. Our combined methods allowed us to successfully recruit 341 African American women (247 with breast cancer and 94 relatives without breast cancer) from 127 families. Twenty-nine percent of participants were recruited through National Witness Project (NWP) sites, 11 % came from in-person encounters by NWP members, 34 % from the Love Army of Women, 24 % from previous epidemiologic studies, and 2 % from a support group. In terms of demographics, our varied recruitment methods/sources yielded samples of African American women that differ in terms of several sociodemographic factors such as education, smoking, and BMI, as well as family size. To successfully recruit African American families into epidemiological research, investigators should include community members in the recruitment processes, be flexible in the adoption of multipronged, iterative methods, and provide clear communication strategies about the underlying benefit to potential participants. Our results enhance our understanding of potential benefits and challenges associated with various recruitment methods. We offer a template for the design of future studies and suggest that generalizability may be better achieved by using multipronged approaches.

Entities:  

Year:  2014        PMID: 25112899      PMCID: PMC4286558          DOI: 10.1007/s12687-014-0199-8

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


  18 in total

Review 1.  A systematic review of strategies that increase the recruitment and retention of African American adults in genetic and genomic studies.

Authors:  Vanessa A Johnson; Yolanda M Powell-Young; Elisa R Torres; Ida J Spruill
Journal:  ABNF J       Date:  2011

Review 2.  Minority recruitment in hereditary breast cancer research.

Authors:  Chanita Hughes; Susan K Peterson; Amelie Ramirez; Kipling J Gallion; Paige Green McDonald; Celette Sugg Skinner; Deborah Bowen
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2004-07       Impact factor: 4.254

3.  Methods and strategies to recruit African Americans into cancer prevention surveillance studies.

Authors:  Jessie A Satia; Joseph A Galanko; Barbara K Rimer
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2005-03       Impact factor: 4.254

4.  Participation in research studies: factors associated with failing to meet minority recruitment goals.

Authors:  Raegan W Durant; Roger B Davis; Diane Marie M St George; Ishan Canty Williams; Connie Blumenthal; Giselle M Corbie-Smith
Journal:  Ann Epidemiol       Date:  2007-05-25       Impact factor: 3.797

5.  Recruiting research participants at community education sites.

Authors:  Georgia Robins Sadler; Melanie Peterson; Linda Wasserman; Paul Mills; Vanessa L Malcarne; Cheryl Rock; Sonia Ancoli-Israel; Amanda Moore; Rai-Nesha Weldon; Tenisha Garcia; Richard D Kolodner
Journal:  J Cancer Educ       Date:  2005       Impact factor: 2.037

6.  Receipt of genetic counseling recommendations among black women at high risk for BRCA mutations.

Authors:  Hayley S Thompson; Katarina Sussner; Marc D Schwartz; Tiffany Edwards; Andrea Forman; Lina Jandorf; Karen Brown; Dana H Bovbjerg; Heiddis B Valdimarsdottir
Journal:  Genet Test Mol Biomarkers       Date:  2012-10-11

7.  Association of sleep duration and breast cancer OncotypeDX recurrence score.

Authors:  Cheryl L Thompson; Li Li
Journal:  Breast Cancer Res Treat       Date:  2012-07-03       Impact factor: 4.872

8.  An exploration of attitudes among black Americans towards psychiatric genetic research.

Authors:  Eleanor Murphy; Azure Thompson
Journal:  Psychiatry       Date:  2009       Impact factor: 2.458

9.  Community-based participatory research: lessons learned from the Centers for Children's Environmental Health and Disease Prevention Research.

Authors:  Barbara A Israel; Edith A Parker; Zachary Rowe; Alicia Salvatore; Meredith Minkler; Jesús López; Arlene Butz; Adrian Mosley; Lucretia Coates; George Lambert; Paul A Potito; Barbara Brenner; Maribel Rivera; Harry Romero; Beti Thompson; Gloria Coronado; Sandy Halstead
Journal:  Environ Health Perspect       Date:  2005-10       Impact factor: 9.031

10.  Conducting Molecular Epidemiological Research in the Age of HIPAA: A Multi-Institutional Case-Control Study of Breast Cancer in African-American and European-American Women.

Authors:  Christine B Ambrosone; Gregory L Ciupak; Elisa V Bandera; Lina Jandorf; Dana H Bovbjerg; Gary Zirpoli; Karen Pawlish; James Godbold; Helena Furberg; Anne Fatone; Heiddis Valdimarsdottir; Song Yao; Yulin Li; Helena Hwang; Warren Davis; Michelle Roberts; Lara Sucheston; Kitaw Demissie; Kandace L Amend; Paul Tartter; James Reilly; Benjamin W Pace; Thomas Rohan; Joseph Sparano; George Raptis; Maria Castaldi; Alison Estabrook; Sheldon Feldman; Christina Weltz; Margaret Kemeny
Journal:  J Oncol       Date:  2009-10-25       Impact factor: 4.375

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  12 in total

Review 1.  Examining aspects of successful community-based programs promoting cancer screening uptake to reduce cancer health disparity: A systematic review.

Authors:  Sumit K Shah; Mayumi Nakagawa; Benjamin J Lieblong
Journal:  Prev Med       Date:  2020-08-31       Impact factor: 4.018

Review 2.  Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications.

Authors:  Danielle M Dick; Peter Barr; Mignonne Guy; Aashir Nasim; Denise Scott
Journal:  Am J Addict       Date:  2017-02-27

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

Authors:  Pearl A McElfish; Marie-Rachelle Narcisse; Christopher R Long; Britni L Ayers; Nicola L Hawley; Nia Aitaoto; Sheldon Riklon; L Joseph Su; Shumona Z Ima; Ralph O Wilmoth; Thomas K Schulz; Susan Kadlubar
Journal:  J Community Genet       Date:  2017-07-08

4.  Putative linkage signals identified for breast cancer in African American families.

Authors:  Heather M Ochs-Balcom; Xiangqing Sun; Yanwen Chen; Jill Barnholtz-Sloan; Deborah O Erwin; Lina Jandorf; Lara Sucheston-Campbell; Robert C Elston
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2014-12-04       Impact factor: 4.254

5.  Attitudes and experiences regarding genetic research among persons of African descent.

Authors:  Denise M Scott; Veronica G Thomas; Jane Otado; Faun Rockcliffe; Omotomilade Olopoenia; Dietrich Johnson; Shawneequa Callier
Journal:  J Community Genet       Date:  2019-05-06

6.  Sistas Inspiring Sistas Through Activity and Support (SISTAS): Study Design and Demographics of Participants.

Authors:  Malcolm Bevel; Oluwole A Babatunde; Sue P Heiney; Heather M Brandt; Michael D Wirth; Thomas G Hurley; Samira Khan; Hiluv Johnson; Cassandra M Wineglass; Tatiana Y Warren; E Angela Murphy; Erica Sercy; Amanda S Thomas; James R Hébert; Swann Arp Adams
Journal:  Ethn Dis       Date:  2018-04-26       Impact factor: 1.847

7.  Why African Americans say "No": A Study of Pharmacogenomic Research Participation.

Authors:  Mohammed Nooruddin; Courtney Scherr; Paula Friedman; Ramesh Subrahmanyam; Jeff Banagan; Diana Moreno; Myurani Sathyanarayanan; Edith Nutescu; Tharani Jeyaram; Mary Harris; Honghong Zhang; Adriana Rodriguez; Mohammed Shaazuddin; Minoli Perera; Matthew Tuck
Journal:  Ethn Dis       Date:  2020-04-02       Impact factor: 1.847

8.  Respecting Autonomy And Enabling Diversity: The Effect Of Eligibility And Enrollment On Research Data Demographics.

Authors:  Kayte Spector-Bagdady; Shengpu Tang; Sarah Jabbour; W Nicholson Price; Ana Bracic; Melissa S Creary; Sachin Kheterpal; Chad M Brummett; Jenna Wiens
Journal:  Health Aff (Millwood)       Date:  2021-12       Impact factor: 6.301

9.  Learning from Black/African American Participants: Applying the Integrated Behavioral Model to Assess Recruitment Strategies for a Glaucoma Genetic Study.

Authors:  Ava Kikut; Mohima Sanyal; Marquis Vaughn; Katherine Ellen Ridley-Merriweather; Katharine Head; Rebecca Salowe; Sara Lomax-Reese; Monica Lewis; Ahmara G Ross; Qi N Cui; Victoria Addis; Prithvi S Sankar; Eydie Miller-Ellis; Joan M O'Brien
Journal:  Health Commun       Date:  2020-12-19

10.  Consent to specimen storage and continuing studies by race and ethnicity: a large dataset analysis using the 2011-2012 National Health and Nutrition Examination Survey.

Authors:  Andre Gabriel; Catherine Crawford Cohen; Carolyn Sun
Journal:  ScientificWorldJournal       Date:  2014-11-18
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