Henderson Gail, Garrett Joanne, Bussey-Jones Jada, Moloney Mairead Eastin, Blumenthal Connie, Corbie-Smith Giselle
Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina 27599-7240, USA.
Genet Med. 2008 Mar;10(3):193-200. doi: 10.1097/GIM.0b013e318164e4f5.
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).
Quantitative and qualitative cross-sectional analysis of 801 NCCCS participants.
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.
Despite very positive attitudes of these participants toward genetic research, there is significant variation based on participant characteristics. These findings should encourage and caution researchers attempting to recruit prior participants into genetic studies.
招募基因研究的既往参与者是一种被建议的策略，旨在最大限度地有效利用基因-环境研究中的研究资金。我们在一项结肠癌病例对照基因流行病学研究——北卡罗来纳州结直肠癌研究（NCCCS）中，探讨了人们对参与基因研究的态度。
对801名NCCCS参与者进行定量和定性横断面分析。
参与者对基因研究“非常积极”（63%）或“积极”（32%），并且“非常有可能”（49%）或“有些可能”（40%）参与未来的基因研究。与感觉“非常积极”显著相关的变量包括白人种族、受教育程度更高、无宗教信仰、对基因研究“了解很多”以及对医学研究的两种信任度量。除了种族和教育程度外，相同的变量与“非常有可能”参与未来研究显著相关。从定性角度来看，对自己和家人的“好处”包括发现癌症的病因和治疗方法以及基因信息的价值。许多人无法列出“坏处”；那些能列出的人提到了焦虑、“知道得太多”、失去保密性或信息滥用。
尽管这些参与者对基因研究态度非常积极，但基于参与者特征仍存在显著差异。这些发现应该对试图招募既往参与者参与基因研究的研究人员起到鼓励和警示作用。
