Special Issue: Enhancing Minority Recruitment into Genetics Research

Abstract

people are healthier than people not recruited, and (2) the high quality treatment, surveillance, and follow-up provided to participants in clinical trials versus the more variable quality provided to the general public. For these reasons, it is important to come up with methods to improve access to research participation for disadvantaged minorities. Therefore, we need to identify methods of increasing participation of ethnic minorities into genetic research projects. To date, recruitment into cancer genetics studies has mostly focused on enriched families with multiple cases of the cancer under study, often from clinical settings where genetic testing is provided [6] . Furthermore, patients recruited for those studies have been mostly Caucasian or White, with little targeted efforts to engage nonWhite participants in research. Given that minority participation in research is lagging and that knowledge on minorities is important to inform cancer prevention and care policies, the National Cancer Institute funded the Cancer Genetics Network with the task to research on minority participation in cancer studies and find methods to enhance it. The articles in this special issue of Community Genetics present a variety of approaches to enhance minority recruitment into large, populationbased studies. We hope that this collection of studies will help investigators to enhance recruitment of minority participants in their studies and that this will lead to better ways of preventing cancer. Participation of families and patients from ethnic minorities in health research in general and genetics research specifically is lower than participation from Caucasian families in the US [1] . This lower participation of minorities is problematic from both a scientific and a social justice viewpoint. From a scientific standpoint, lack of participation of ethnic minorities prevents the exploration of specific ethnic differences in patterns of disease [2–4] . In turn, the lack of study of the genetic patterns of disease and risks among diverse ethnic and racial groups leads to the inability to identify differential risks among ethnic groups. Furthermore, although it is widely recognized that health disparities between ethnic groups are overwhelmingly environmental in nature (differences in socioeconomic status, education, culture, lifestyles, etc.) [5, 6] , the lack of genetic studies in minorities prevents to rule out that differences in health status among ethnic groups could be due in part to genetic differences. This knowledge is critical as we move forward to apply genetic approaches to modern medicine. From a social justice standpoint, it is important to create research settings that have equitable access to participate for all persons, independent of ethnic background and other social status and structure variables. There is some evidence that people who participate in research projects, specifically clinical trials, report better health outcomes than do people who do not participate in research [7] . There are many hypotheses as to why this would be true, including (1) a selfselection bias in the groups recruited such that recruited