Search

Newborn screening in Alaska includes screening for carnitine palmitoyltransferase 1A (CPT1A) deficiency. The CPT1A Arctic variant is a variant highly prevalent among Indigenous peoples in the Arctic. In this study, we sought to elicit Alaska Native (AN) community member and AN-serving healthcare providers' knowledge and perspectives on the CPT1A Arctic variant. Focus groups with community members and healthcare providers were held in two regions of Alaska between October 2018 and January 2019. Thematic analysis was used to identify recurring constructs. Knowledge and understanding about the CPT1A Arctic variant and its health impact varied, and participants were interested in learning more about it. Additional education for healthcare professionals was recommended to improve providers' ability to communicate with family caregivers about the Arctic variant. Engagement with AN community members identified opportunities to improve educational outreach via multiple modalities for providers and caregivers on the Arctic variant, which could help to increase culturally relevant guidance and avoid stigmatization, undue worry, and unnecessary intervention. Education and guidance on the care of infants and children homozygous for the CPT1A Arctic variant could improve care and reduce negative psychosocial effects., (© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

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.

American Indian and Alaska Native (AI/AN) people experience high rates of acute, chronic, and intergenerational trauma. Traumatic experiences often increase the risk of both medical and behavioral health problems making primary care settings opportune places to screen for trauma exposure or symptomology. The objective of this study was to determine considerations and recommendations provided by patients, health care providers, health care administrators, and tribal leaders in the development of an adult trauma screening, brief intervention, and referral for treatment process to pilot at two large AI/AN primary care systems. A qualitative and iterative data collection and analysis process was undertaken using a community-based participatory research approach guided by a cross-site steering committee. Twenty-four leaders and providers participated in individual interviews, and 13 patients participated in four focus groups. Data were thematically analyzed to select a trauma screening instrument, develop a screening process, and develop brief intervention materials. The nature of traumas experienced in the AI/AN community, the need to develop trusting patient-provider relationships, and the human resources available at each site drove the screening, brief intervention, and referral process decisions for a future trauma screening pilot in these health systems.