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Grant Details

Grant Number: 5R21CA163171-02 Interpret this number
Primary Investigator: Kelly, Janet
Organization: Alaska Native Tribal Health Consortium
Project Title: Exploring the Attitudes and Use of Family Cancer History and Biospecimen Collecti
Fiscal Year: 2013


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.


Perspectives on communication and engagement with regard to collecting biospecimens and family health histories for cancer research in a rural Alaska Native community.
Authors: Dirks L.G. , Shaw J.L. , Hiratsuka V.Y. , Beans J.A. , Kelly J.J. , Dillard D.A. .
Source: Journal of community genetics, 2019 Jul; 10(3), p. 435-446.
EPub date: 2019-01-30.
PMID: 30701443
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