Literature DB >> 24882437

Strategies for enrollment of African Americans into cancer genetic studies.

Altovise Ewing1, Nicole Thompson, Luisel Ricks-Santi.   

Abstract

The enrollment of ethnically diverse populations in genetic and genomic research is vital to the parity of benefits resulting from research with biological specimens. Herein, we discuss strategies that may effectively improve the recruitment of African Americans into genetics studies. Specifically, we show that engaging physicians, genetic counselors, and community members is essential to enrolling participants into genetic studies. We demonstrate the impact of utilizing African American genetic counselors on study enrollment rates and implementing a two-page consent form that improved on a lengthy and inefficient consenting process. Lastly, we provided participants with the option of donating saliva instead of blood for study purposes. Descriptive statistics were used. Using the aforementioned strategies, recruitment goals for the Genetic Basis of Breast Cancer Subtype Study at Howard University (HU) were met. Our overall results yielded 182 participants in 18 months. Recruitment strategies that involve the engagement of physicians, genetic counselors, and community members may help researchers increase the enrollment of ethnically diverse and hard-to-reach participants into genetic studies.

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Mesh:

Year:  2015        PMID: 24882437      PMCID: PMC4254900          DOI: 10.1007/s13187-014-0669-z

Source DB:  PubMed          Journal:  J Cancer Educ        ISSN: 0885-8195            Impact factor:   2.037


  46 in total

Review 1.  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

2.  A new definition of Genetic Counseling: National Society of Genetic Counselors' Task Force report.

Authors:  Robert Resta; Barbara Bowles Biesecker; Robin L Bennett; Sandra Blum; Susan Estabrooks Hahn; Michelle N Strecker; Janet L Williams
Journal:  J Genet Couns       Date:  2006-04       Impact factor: 2.537

3.  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

4.  Genes and environments: moving toward personalized medicine in the context of health disparities.

Authors:  Rick Kittles
Journal:  Ethn Dis       Date:  2012       Impact factor: 1.847

5.  Increasing voluntary HIV testing by offering oral tests in incarcerated populations.

Authors:  R L Bauserman; M A Ward; L Eldred; A Swetz
Journal:  Am J Public Health       Date:  2001-08       Impact factor: 9.308

6.  Using a family history intervention to improve cancer risk perception in a black community.

Authors:  Vinaya S Murthy; Mary A Garza; Donna A Almario; Kristen J Vogel; Robin E Grubs; Elizabeth A Gettig; John W Wilson; Stephen B Thomas
Journal:  J Genet Couns       Date:  2011-07-20       Impact factor: 2.537

7.  Recruitment of older African Americans for survey research: a process evaluation of the community and church-based strategy in The Durham Elders Project.

Authors:  Peter S Reed; Kristie Long Foley; John Hatch; Elizabeth J Mutran
Journal:  Gerontologist       Date:  2003-02

Review 8.  Strategies and stakeholders: minority recruitment in cancer genetics research.

Authors:  Rosalina D James; Joon-Ho Yu; Nora B Henrikson; Deborah J Bowen; Stephanie M Fullerton
Journal:  Community Genet       Date:  2008-04-14

9.  Informed consent for genetic research.

Authors:  Aaron Hamvas; Katherine K Madden; Lawrence M Nogee; Michelle A Trusgnich; Daniel J Wegner; Hillary B Heins; F Sessions Cole
Journal:  Arch Pediatr Adolesc Med       Date:  2004-06

10.  Consent for genetic research in a general population: the NHANES experience.

Authors:  Geraldine M McQuillan; Kathryn S Porter; Maria Agelli; Raynard Kington
Journal:  Genet Med       Date:  2003 Jan-Feb       Impact factor: 8.822

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  9 in total

1.  Demographic differences in willingness to provide broad and narrow consent for biobank research.

Authors:  Altovise T Ewing; Lori A H Erby; Juli Bollinger; Eva Tetteyfio; Luisel J Ricks-Santi; David Kaufman
Journal:  Biopreserv Biobank       Date:  2015-03-31       Impact factor: 2.300

2.  Factors associated with willingness to provide biospecimens for genetics research among African American cancer survivors.

Authors:  Altovise T Ewing; Nnenna Kalu; Gloria Cain; Lori H Erby; Luisel J Ricks-Santi; Eva Tetteyfio-Kidd Telemaque; Denise M Scott
Journal:  J Community Genet       Date:  2019-03-14

3.  Why Patients Decline Genomic Sequencing Studies: Experiences from the CSER Consortium.

Authors:  Laura M Amendola; Jill O Robinson; Ragan Hart; Sawona Biswas; Kaitlyn Lee; Barbara A Bernhardt; Kelly East; Marian J Gilmore; Tia L Kauffman; Katie L Lewis; Myra Roche; Sarah Scollon; Julia Wynn; Carrie Blout
Journal:  J Genet Couns       Date:  2018-03-01       Impact factor: 2.537

4.  Increased ease of access to genetic counseling for low-income women with breast cancer using a point of care screening tool.

Authors:  Smita K Rao; Kimberly A Thomas; Rajbir Singh; Eden Biltibo; Philip E Lammers; Georgia L Wiesner
Journal:  J Community Genet       Date:  2021-01-03

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.  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

7.  Serum exosomal-annexin A2 is associated with African-American triple-negative breast cancer and promotes angiogenesis.

Authors:  Pankaj Chaudhary; Lee D Gibbs; Sayantan Maji; Cheryl M Lewis; Sumihiro Suzuki; Jamboor K Vishwanatha
Journal:  Breast Cancer Res       Date:  2020-01-28       Impact factor: 6.466

8.  Lessons Learned from the Pilot Phase of a Population-Wide Genomic Screening Program: Building the Base to Reach a Diverse Cohort of 100,000 Participants.

Authors:  Caitlin G Allen; Leslie Lenert; Kelly Hunt; Amy Jackson; Elissa Levin; Catherine Clinton; John T Clark; Kelli Garrison; Sam Gallegos; Karen Wager; Wenjun He; Katherine Sterba; Paula S Ramos; Cathy Melvin; Marvella Ford; Kenneth Catchpole; Lori McMahon; Daniel P Judge
Journal:  J Pers Med       Date:  2022-07-27

9.  Engaging community stakeholders in research on best practices for clinical genomic sequencing.

Authors:  Ida Griesemer; Brooke S Staley; Alexandra F Lightfoot; Lizzy Bain; Derrick Byrd; Carol Conway; Tracey L Grant; Barbara Leach; Laura Milko; Lonna Mollison; Nadiah Porter; Sharron Reid; Gerri Smith; Margaret Waltz; Jonathan S Berg; Christine Rini; Julianne M O'Daniel
Journal:  Per Med       Date:  2020-10-07       Impact factor: 2.512

  9 in total

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