Great expectations: views of genetic research participants regarding current and future genetic studies

Abstract

Purpose: Recruitment of prior participants in genetic research is one strategy suggested to maximize efficient use of research dollars in gene-environment studies. We explored attitudes toward genetic research participation among people in a case-control genetic epidemiology study of colon cancer, the North Carolina Colorectal Cancer Study (NCCCS). Methods: Quantitative and qualitative cross-sectional analysis of 801 NCCCS participants.Results: Participants were "very positive" (63%) or "positive" (32%) about genetic research, and "very likely" (49%) or "somewhat likely" (40%) to participate in future genetic research. Variables significantly associated with feeling "very positive" were white race, more education, nonreligious, hearing "a lot" about genetic research, and two measures of trust in medical research. Except for race and education, the same variables were significantly associated with being "very likely" to participate in future studies. Qualitatively, "good things" for self and family included discovering causes and cures for cancer, and the value of genetic information. Many could not list "bad things"; those who did mentioned anxiety, "knowing too much," losing confidentiality, or abuse of information.

Public and Biobank Participant Attitudes toward Genetic Research Participation and Data Sharing

“…Participants identified trust in the research organization as a key positive influence to participation in genetic research. This finding is consistent with other studies [18,24,25,26], and trust in the research organization has been identified as particularly important in recruiting minority research participants [25]. Considerable discussion occurred in both group types concerning lack of trust in governmental oversight of genetic research data and the need for transparency in data sharing and monitoring policies.…”

“…Other investigators have similarly found that education, particularly about the complex information involved in data sharing and genetic research, should be broadly communicated and aimed at the public and targeted research populations [18,26]. Focus group participants offered education methods and strategies they thought would be most suitable for the public.…”

Motivations and Perceptions of Early Adopters of Personalized Genomics: Perspectives from Research Participants

“…Those not working in the health care field were particularly susceptible to these misunderstandings. Such high public expectations of genetics have been observed in other studies [31,32,33]. The misperceptions observed in this relatively highly educated study population, particularly conflating testing for common complex diseases with that for single-gene disorders and reproductive genetics, suggests that members of the public will not easily distinguish between the ‘old’ paradigm of genetic disorders and the ‘new’ paradigm of genomic risk information for chronic complex diseases [34].…”

Why do participants enroll in population biobank studies? A systematic literature review

“…In disease-specific biobank research settings, it is the identification with the disease being studied (through personal or familial experience), which appeared to play a decisive role among donors [13][14][15]. The idea of belonging to a group of people suffering the same condition acts as a triggering factor as well as the wish to invest in the future health of an 'imagined community' [16].…”