Perspectives on communication and engagement with regard to collecting biospecimens and family health histories for cancer research in a rural Alaska Native community
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Precision medicine initiatives, such as Cancer Breakthrough 2020, promise to improve cancer outcomes by tailoring treatment to an individual’s genes, environment, and lifestyle. This promise will fall short unless researchers successfully engage diverse communities, including those with histories of medical and research abuse. We examined a rural Alaska Native community’s viewpoints about biospecimen collection and storage; interest and recall in reporting family health history; and interest and engagement in biospecimen collection for conducting a genetic test for cancer. In 2014, four focus groups were held with 28 adult Alaska Native rural community members. Thematic analysis was performed after establishing a coding scheme by team consensus. Study participants shared interest in engaging in genetic cancer research and suggested ways to improve community engagement in research. These included transparency and continuous communication with researchers at all stages of the research, clear communication about the intent of the research, and that research and results take into consideration the community’s needs. These suggestions may be beneficial for future efforts to expand precision medicine research in Alaska Native communities and similar, diverse populations.
KeywordsEthics, research Community engagement Alaska Native people Genetic research Precision medicine
We would like to thank the community members where this study took place with a special thank you to the community’s tribal government and health care agencies. We would also like to thank Susan Brown-Trinidad for a review of a late draft of this manuscript.
This study was supported by the National Cancer Institute (1R21CA163171) and the National Institute of General Medical Sciences (U261IHS0079 and 1S06GM123545).
Compliance with ethical standards
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5).
Conflict of interest
The authors declare that they have no conflict of interest.
Statement of informed consent
Informed consent was obtained from all participants for being included in the study.
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