LeARN provides a unique opportunity to understand the challenges of recruiting diverse populations that are part of existing genetic research, to understand their perceptions of genetic research and the motivations and concerns of subjects most likely to be asked to participate in large cohort studies. Our results are particularly relevant for new NIH funded collaborations in which biologic samples and data from multiple existing cohort studies are linked to provide a powerful resource for new types of genetic research. In the draft report the Secretary's Advisory Committee on Genetics, Health and Society calls for engagement of populations in all stages of the decision making, planning, and execution of genetic research. Included in these populations are those that might be involved as participants in genetic research (1
We found that enlisting participation, even from those who have already agreed to participate in genetic research, has its own challenges. While the majority of individuals in NCCCS expressed interest in other studies, we were ultimately able to recruit a smaller subset of eligible and interested respondents. The accuracy of contact information had a differential impact on participation of blacks and whites. Our efforts were also complicated by the fact that we were not the only research team attempting to recruit individuals who have participated in genetic research. Second, we found that asking questions about genetic research is challenging. To ensure external and internal validity, we extensively pre-tested open ended questions on views of genetic research, and used a mixed methods approach to collect data that would provide more detailed and nuanced information on participants' views of genetic research. In fact, the data we collected were rich and varied, representing a broad spectrum of views. However, we were left pondering the responses of a small percentage of respondents who seemed not to understand the questions we posed.
The attractiveness of existing cohorts is clear. The cost of assembling new cohorts of individuals can be prohibitive; if sampled and assembled carefully, existing population-based studies provide an efficient method of recruitment for other research, particularly when a convenience sample rather than random probability sampling is appropriate. Despite clear efficiencies, our findings suggest that the informed consent process still needs to be deliberate and detailed. A substantial minority of LeARN participants said that they didn't understand questions on the positives and negatives of genetic research. Tailoring the consent process to educational attainment or other factors that affect participant understanding may increase understanding for this subgroup. Despite the extensive, multi-staged consent process that NCCCS used with all participants, it is possible that participation in a prior study will only incrementally increase understanding of genetic research.
As evidenced by this research, raising genetic literacy and awareness among the lay public will also be an important step in ensuring full participation of communities in genetic research. One such attempt has been a sequence of regional conferences held annually since 2005. These Community Genetics Forums, sponsored by the Education and Community Involvement Branch at the National Human Genome Research Institute, are designed to create models of community engagement and to enhance existing models of public engagement and public participation (9
). Over the course of a year they bring together the scientific and lay community to discuss the ethical, legal and social implications of genetic research for communities, using a variety of venues from lectures to performance art (10
). Continued efforts to raise genetic literacy of potential participants will be critical to seeing the potential of genetic research realized in a manner that takes into account the perspectives of diverse groups that are to benefit from this research.