Using community-based participatory research principles to develop more understandable recruitment and informed consent documents in genomic research.
BACKGROUND
Heart Healthy Lenoir is a transdisciplinary project aimed at creating long-term, sustainable approaches to reduce cardiovascular disease risk disparities in Lenoir County, North Carolina using a design spanning genomic analysis and clinical intervention. We hypothesized that residents of Lenoir County would be unfamiliar and mistrustful of genomic research, and therefore reluctant to participate; additionally, these feelings would be higher in African-Americans.


METHODS
To test our hypothesis, we conducted qualitative research using community-based participatory research principles to ensure our genomic research strategies addressed the needs, priorities, and concerns of the community. African-American (n = 19) and White (n = 16) adults in Lenoir County participated in four focus groups exploring perceptions about genomics and cardiovascular disease. Demographic surveys were administered and a semi-structured interview guide was used to facilitate discussions. The discussions were digitally recorded, transcribed verbatim, and analyzed in ATLAS.ti.


CONCLUSIONS
From our analysis, key themes emerged: transparent communication, privacy, participation incentives and barriers, knowledge, and the impact of knowing. African-Americans were more concerned about privacy and community impact compared to Whites, however, African-Americans were still eager to participate in our genomic research project. The results from our formative study were used to improve the informed consent and recruitment processes by: 1) reducing misconceptions of genomic studies; and 2) helping to foster participant understanding and trust with the researchers. Our study demonstrates how community-based participatory research principles can be used to gain deeper insight into the community and increase participation in genomic research studies. Due in part to these efforts 80.3% of eligible African-American participants and 86.9% of eligible White participants enrolled in the Heart Healthy Lenoir Genomics study making our overall enrollment 57.8% African-American. Future research will investigate return of genomic results in the Lenoir community.
Department of Nutrition, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States of America.
Harlyn G
HG
Skinner
Department of Nutrition, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States of America.
Larissa
L
Calancie
Center for Health Promotion and Disease Prevention, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States of America.
Maihan B
MB
Vu
Center for Health Promotion and Disease Prevention, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States of America.
Beverly
B
Garcia
Center for Health Promotion and Disease Prevention, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States of America.
Molly
M
DeMarco
Presbyterian Hospital/Weill-Cornell Medical Center, New York, New York, United States of America.
Cam
C
Patterson
Department of Nutrition, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States of America; Center for Health Promotion and Disease Prevention, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States of America.
Alice
A
Ammerman
McAllister Heart Institute, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States of America; Department of Pharmacology, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States of America.
Jonathan C
JC
Schisler
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003142:Communication; D055812:Community-Based Participatory Research; D032962:Consent Forms; D003710:Demography; D005260:Female; D017144:Focus Groups; D023281:Genomics; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007258:Informed Consent; D008297:Male; D008875:Middle Aged; D009042:Motivation; D010560:Personnel Selection; D018907:Privacy; D055815:Young Adult