[HTML][HTML] Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers
VY Hiratsuka, MJ Hahn, RB Woodbury, SC Hull… - Genetics in …, 2020 - Elsevier
Abstract Meaningful engagement of Alaska Native (AN) tribes and tribal health organizations
is essential in the conduct of socially responsible and ethical research. As genomics …
is essential in the conduct of socially responsible and ethical research. As genomics …
Disseminating complex primary outcome results from a community-randomised trial to Zambian communities: lessons learned using a community dialogue approach …
M Simwinga, R Ndubani, A Schaap, D Ziba… - The Lancet …, 2022 - thelancet.com
The HPTN 071 (PopART) trial of universal HIV testing and treatment to reduce HIV incidence
was conducted in nine communities in South Africa and 12 in Zambia. The trial's primary …
was conducted in nine communities in South Africa and 12 in Zambia. The trial's primary …
Health disparities research with American Indian communities: The importance of trust and transparency
Abstract American Indian and Alaska Native (AI/AN) communities experience notable health
disparities associated with substance use, including disproportionate rates of …
disparities associated with substance use, including disproportionate rates of …
Deliberations with American Indian and Alaska native people about the ethics of genomics: an adapted model of deliberation used with three tribal communities in the …
Background This paper describes the design, implementation, and process outcomes from
three public deliberations held in three tribal communities. Although increasingly used …
three public deliberations held in three tribal communities. Although increasingly used …
Hearing Norton Sound: community involvement in the design of a mixed methods community randomized trial in 15 Alaska Native communities
SK Robler, SM Inglis, JJ Gallo, HE Parnell… - Research Involvement …, 2020 - Springer
Plain English summary Community involvement is important in good research practice. We
led a community-based study to improve early detection and treatment of childhood hearing …
led a community-based study to improve early detection and treatment of childhood hearing …
[HTML][HTML] Exploring the perceived effectiveness and cultural acceptability of COVID-19 relevant social media intervention content among Alaska Native people who …
CA Patten, KR Koller, PS Sinicrope… - Preventive Medicine …, 2022 - Elsevier
Social media platforms have potential for reach and effectiveness to motivate smoking
cessation and use of evidence-based cessation treatment, even during the worldwide …
cessation and use of evidence-based cessation treatment, even during the worldwide …
Data management in health-related research involving indigenous communities in the United States and Canada: A scoping review
RB Woodbury, JA Beans, VY Hiratsuka… - Frontiers in …, 2019 - frontiersin.org
Background: Multiple factors, including experiences with unethical research practices, have
made some Indigenous groups in the United States and Canada reticent to participate in …
made some Indigenous groups in the United States and Canada reticent to participate in …
Fostering ethical, legal, and social implications research in tribal communities: The Center for the Ethics of Indigenous Genomic Research
VY Hiratsuka, JA Beans, J Reedy… - Journal of Empirical …, 2020 - journals.sagepub.com
Genomic research raises unique ethical concerns among Alaska Native and American
Indian (AN/AI) people and their communities. The Center for the Ethics of Indigenous …
Indian (AN/AI) people and their communities. The Center for the Ethics of Indigenous …
Community perspectives on communicating about precision medicine in an Alaska native tribal health care system
RB Woodbury, JA Beans, KA Wark, P Spicer… - Frontiers in …, 2020 - frontiersin.org
Background: Precision medicine seeks to better tailor medical care to the needs of individual
patients, but there are challenges involved in communicating to patients, health care …
patients, but there are challenges involved in communicating to patients, health care …
[HTML][HTML] Power sharing, capacity building, and evolving roles in ELSI: The Center for the Ethics of indigenous genomic research
J Blanchard, V Hiratsuka, JA Beans… - … (Coral Gables, Fla.), 2020 - ncbi.nlm.nih.gov
Persistent, unresolved issues stemming from a legacy of scientific exploitation and bio-
colonialism have kept many tribal nations from participating in genomic research. The …
colonialism have kept many tribal nations from participating in genomic research. The …