1. A commitment to more inclusive genetics research on alcoholism:
Developing strategies to increase recruitment of diverse groups 
Cory R. Cummings (presenter); Karen G. Chartier (presenter); Priscilla Martinez; Katherine J. Karriker-Jaffe; Thomas K. Greenfield; and J. Denise Burnette
Background: Diverse groups in the U.S. population, such as African Americans and Latinos/as, continue to be underrepresented in genetics research on alcoholism, hindering the generalizability and relevance of findings for these groups (Chartier, Hesselbrock, & Hesselbrock, 2015; Mulia et al, 2009). This means that the advancements produced through this research may not be as accessible and/or as applicable to these groups without more equitable representation. There is a need to focus attention on understanding the hopes and concerns that diverse groups have surrounding participation in genetics alcohol research and to create more responsive recruitment efforts based on this knowledge (Marshall et al., 2013; Million Underwood et al., 2013; Scott et al., 2014; Yancey, Ortega, & Kumanyika, 2006).
Purpose: The aim of this research is to synthesize and translate emerging studies on barriers and facilitators for diverse group participation in genetics research into more effective recruitment and retention strategies for African Americans and Latinos/as. Themes derived from this synthesis will be applied in developing responsive protocols for future studies.
Methods: A systematic review of literature on the topic of recruitment of diverse groups for the purposes of genetic research was conducted.
Key search words were: genetic* research, ethnic, improv* recruitment, African American, Hispanic, Latino, minority, and alcohol. A total of 57 studies were identified.
Preliminary codes were created from 10 high relevance studies. Other studies were coded and thematically analyzed using the preliminary codes.
Themes were extracted based on the coded content.
Results: A number of dimensions emerged for researchers to consider when attempting to engage diverse groups. Facilitators and barriers can be thought of along a number of continua: curiosity – disinterest; trust – mistrust; understanding – confusion; safe – danger; inclusion – exclusion; sense of connection – disconnection; hope – despair; ease – hassle; and benefit – cost. Each of these dimensions have been translated into a reflective question for researchers to consider when designing studies.
Future Directions: These findings are being used to develop scripted messages for recruitment and follow-up protocols targeting African American and Latino/a participation in an upcoming study that will incorporate DNA saliva sample collection as an add-on component to a large, ongoing U.S. population health survey.
Curiosity – Disinterest
How effectively do recruitment efforts appeal to participants’ sense of curiosity about research?
Trust – Mistrust
How well do researchers establish and maintain a sense of trust with and respect for participants?
Understanding – Confusion
How well is the research explained (e.g., the focus, purpose, expectations, procedures, follow-up)?
Safe – Danger
What measures are being taken to assure participant safety is an important priority for this research?
Inclusion – Exclusion
How are diverse groups incorporated in, represented by, and benefiting from this research?
References
Chartier, K. G., Hesselbrock, M., & Hesselbrock, V. (2015). Perspectives on genetic analysis in diverse populations: Opportunities and challenges. Roundtable presented at the Research Society on Alcoholism, San Antonio, TX.
Marshall, V. J., Kalu, N., Kwagyan, J., Williams, C., Taylor, R. E., & Scott, D. M. (2012). Perceptions about genetic testing for the susceptibility to alcohol dependence and other multifactorial diseases. Genetic Testing and Molecular Biomarkers, 16(6),
Millon Underwood, S., Buseh, A. G., Kelber, S. T., Stevens, P. E., & Townsend, L. (2013). Enhancing the participation of African Americans in health-related genetic research: findings of a collaborative academic and community-based research study. Nursing Research and Practice, 2013.
Mulia, N., Ye, Y., Greenfield, T. K., & Zemore, S. E. (2009). Disparities in alcohol-related problems among white, black, and Hispanic Americans. Alcoholism: Clinical and Experimental Research, 33(4),
Scott, D. M., Nwulia, E., Kwagyan, J., Cain, G., Marshall, V. J., Kalu, N., ... & Taylor, R. E. (2014). Genetic testing for the susceptibility to alcohol dependence: interest and concerns in an African American population. Genetic Testing and Molecular Biomarkers, 18(8),
Yancey, A.K., Ortega, A.N., Kumanyika, S.K., (2006). Effective recruitment and retention of minority research participants. Annual Review of Public Health 27, 1-28.
Connection – Disconnection
How are researchers connecting their agendas with the perspectives of participants?
Hope – Despair
How does the research convey a message that change is possible and attainable?
Ease – Hassle
What efforts are being made to reduce participant burden?
Benefit-Cost
What are benefits for participating, especially with competing demands and priorities?