ArticleInternational journal of circumpolar health2012
Alaska native people's perceptions, understandings, and expectations for research involving biological specimens.
Article in International journal of circumpolar health, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
35 citing papers in PubMed, 2 syntheses or guidelines pooled it, 54 citations in OpenAlex.
- A Systematic Review Exploring Empirical Pharmacogenomics Research Within Global Indigenous Populations.Molecular genetics & genomic medicine · 2024Pooled it
- A systematic literature review of Native American and Pacific Islanders' perspectives on health data privacy in the United States.Journal of the American Medical Informatics Association : JAMIA · 2020Pooled it
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Precision medicine research with American Indian and Alaska Native communities: Results of a deliberative engagement with tribal leaders.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Values and Practices to Strengthen Genetic Research Partnerships with Indigenous Communities.Progress in community health partnerships : research, education, and action · 2022Article
- Extending Research Protections to Tribal Communities.The American journal of bioethics : AJOB · 2021Article
- Increasing health equity through biospecimen research: Identification of factors that influence willingness of Native Americans to donate biospecimens.Preventive medicine reports · 2021Article
- Fostering Ethical, Legal, and Social Implications Research in Tribal Communities: The Center for the Ethics of Indigenous Genomic Research.Journal of empirical research on human research ethics : JERHRE · 2020Article
- Community Perspectives on Communicating About Precision Medicine in an Alaska Native Tribal Health Care System.Frontiers in communication · 2020Article
- Incorporating Participant and Clinical Feedback into a Community-Based Participatory Research Study of Colorectal Cancer Among Alaska Native People.Journal of community health · 2020Article
- An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.JCO global oncology · 2020Review
- Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research.Collaborations (Coral Gables, Fla.) · 2020Article
- An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation.PloS one · 2020Article
- Follow-up Study Methods for a Longitudinal Cohort of Alaska Native and American Indian People Living within Urban South Central Alaska: The EARTH Study.Journal of community health · 2019Article
- Health-Related Participatory Research in American Indian and Alaska Native Communities: A Scoping Review.International journal of environmental research and public health · 2019Article
- Perspectives on communication and engagement with regard to collecting biospecimens and family health histories for cancer research in a rural Alaska Native community.Journal of community genetics · 2019Article
- Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review.Frontiers in genetics · 2019Article
- Perspectives on Biological Monitoring in Environmental Health Research: A Focus Group Study in a Native American Community.International journal of environmental research and public health · 2018Article
- Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse).Journal of cancer education : the official journal of the American Association for Cancer Education · 2018Article
- Disseminating Information on Trauma Screening, Brief Intervention, and Referral to Treatment in a Tribal Health Setting: A Case Study.American Indian and Alaska native mental health research (Online) · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesMembers of racially and ethnically diverse groups have been persistently underrepresented in biomedical research in general, possibly due to mistrust with the medical and research community. This article describes the perceptions, understandings, and expectations of Alaska Native people about research involving the collection and storage of biological specimens. STUDY
designStratified focus groups.
methodsTwenty-nine focus groups with Alaska Native people (n = 178) were held in 14 locations using a semi-structured moderator guide. ATLAS.ti was used for thematic analysis through iterative readings and coding. Alaska Native peoples' perceptions, understandings, and expectations of researcher beneficence, informed consent processes, and provision of research findings were elicited. RESULTS AND
conclusionsAlaska Native people desired extensive disclosure of information beyond that typically provided in consent and results dissemination processes. Information germane to the motivation and intent of researchers and specifics of specimen storage and destruction were specifically requested. A clear and extensive process of informed consent and continued improvements in sharing results may enhance the transparency of research intent, conduct, and use of obtained results among Alaska Native people. Meeting expectations may improve relationships between researchers and the Alaska Native population which could result in increased research participation. Our findings offer a guide for researchers and communities when planning and implementing research with biological specimens.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.