Exploring the Attitudes and Use of Family Cancer History and Biospecimen Collecti

描述（由申请人提供）：癌症在20世纪50年代是一种罕见的疾病，当时阿拉斯加原住民（AN）的主要死亡原因是传染病。今天，癌症是导致非洲人死亡的主要原因。非洲裔男性和女性的癌症死亡率大大超过美国白人、亚洲人和非洲裔/非洲裔人群（10）。与美国白人相比，澳大利亚人的肺癌、结肠直肠癌、胃癌、肾癌、肝癌、胆囊癌、胰腺癌、食道癌和口腔癌/咽喉癌的发病率明显更高。在AN女性中最常见的癌症是乳腺癌（30%）、结肠直肠癌（19%）和肺癌（13%）。美国男性的主要癌症是：肺癌（20%）、结肠直肠癌（19%）和前列腺癌（13%）。该试点项目将评估为癌症研究目的从生活在农村社区的非洲人身上收集和储存生物标本的可接受性和可行性。我们期望这项研究将为其他AN社区提供一个模型方法，利用家族健康史和生物标本收集来降低他们的慢性疾病，包括癌症的风险。拟议的研究将包括三个阶段：1)与农村AN社区合作，协商一致地制定研究方法，以获取家庭健康史和用于遗传和表观遗传研究的生物标本；2)确定社区偏好的家族史数据收集方法：自我管理与访谈管理的家族史，并通过焦点小组和调查问卷确定对生物标本收集的关注和偏好；3)经社区批准，收集用于遗传变异和癌症风险研究的生物标本。该项目的成果可促进其他社区的护士和保健提供者之间就记录家庭健康史的价值进行对话。我们预计，家族史软件产生的结果将激励一些人选择健康的生活方式，以减少癌症和其他疾病的风险。这项研究将为生活在阿拉斯加农村社区的ANs的生物标本收集和基因研究提供更好的理解。生物标本收集的基础工作将为该或其他群落建立更大规模的生物标本库提供一种机制。在整个项目中，作为研究人员，我们希望增加我们对家庭健康史，生物标本收集和癌症基因组研究中讨论和实践的文化适当方法的理解。

DESCRIPTION (provided by applicant): Cancer was a rare disease in the 1950s, when the leading cause of death among Alaska Native (AN) people was due to infectious diseases. Today, cancer is the leading cause of death among AN people. Cancer mortality among AN men and women greatly exceeds that of US White, Asian, and AI/AN populations (10). Cancer incidence rates are significantly higher among AN people compared to US Whites for lung, colorectal, stomach, kidney, liver, gallbladder, pancreas, esophagus and oral/pharyngeal cancers. The most frequently diagnosed cancers among AN women are breast (30 percent), colorectal (19 percent) and lung (13 percent). Leading cancers among AN men are: lung (20 percent), colorectal (19 percent) and prostate (13 percent). This pilot project will assess the acceptability and feasibility of collecting and storing biospecimens from AN people living in a rural community for the purposes of cancer research. We anticipate that this research will provide a model approach for other AN communities to use family health history and biospecimen collection to reduce their risks of chronic disease, including cancer. The proposed study will include three phases: 1) Collaboration with a rural AN community and consensual development of the research approach to obtaining family health history and biospecimens for genetic and epigenetic studies; 2) Determination of the community-preferred method for the collection of family history data: self-administered vs. interview administered family health history, and identification of concerns and preferences regarding biospecimen collection through focus groups and survey questionnaires; and 3) Upon community approval, collection of biospecimens for a study of genetic variants and cancer risk. Results of this project could promote dialogue in other communities among ANs and healthcare providers on the value of recording family health history. We anticipate that results generated by the family history software will motivate some individuals to make healthy lifestyle choices to reduce cancer and other disease risks. This research will provide a greater understanding of biospecimen collection and genetic research concerns among ANs living in a rural Alaska community. The groundwork of biospecimen collection will provide a mechanism to establish a larger-scale biospecimen banking for this or other communities. Throughout this project as researchers, we hope to increase our understanding of culturally appropriate approaches to discussions and practices in family health history, biospecimen collection and cancer genomic research. PUBLIC HEALTH RELEVANCE: Public health is practiced to improve the health of populations, primarily through disease prevention; and the activities of this project, family health history collection, exploring the concerns around biospecimen collection, and conducting a genetic test, share the goals of engaging community members in discussions of cancer risks and prevention strategies, and in the promotion of healthier lifestyles. The collection of biospecimens for future research has the potential to identify disease risks early in individuals as well as in the population.