{"doi":"10.18865/ed.29.s3.659","title":"Access and Management: Indigenous Perspectives on Genomic Data Sharing","abstract":"<jats:p>As genomic researchers are encouraged to engage in broad genomic data shar­ing, American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) leaders have raised questions about ownership of data and biospecimens and concerns over emerging challenges and potential threats to tribal sovereignty. Using a community-engaged research approach, we conducted 42 semi-structured interviews with tribal lead­ers, clinicians, researchers, policy makers, and tribal research review board members about their perspectives on ethical issues related to genetics in AI/AN/NH communi­ties. We report findings related to perspec­tives on genetic research, data sharing, and envisioning stronger oversight and manage­ment of data. In particular, participants voiced concerns about different models of data sharing, infrastructure and logistics for housing data, and who should have authority to grant access to data. The results will ultimately guide policy-making and the creation of guidelines and new strategies for tribes to drive the research agenda and promote ethically and culturally appropriate research.Ethn Dis.2019;29(Suppl 3):659-668;doi:10.18865/ed.29.S3.659</jats:p>","journal":"Ethnicity &amp; Disease","year":2019,"id":617679,"datarank":2.182239402398535,"base_score":4.2626798770413155,"endowment":4.2626798770413155,"self_citation_contribution":0.6394019815561974,"citation_network_contribution":1.5428374208423377,"self_endowment_contribution":0.6394019815561974,"citer_contribution":1.5428374208423377,"corpus_percentile":null,"corpus_rank":null,"citation_count":70,"citer_count":60,"citers_with_citation_signal":34,"citers_with_endowment":34,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":null,"is_data_producer":false,"deposit_databanks":null,"is_oa":false,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":null,"fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":409775,"name":"Krysta S. Barton","orcid":"0000-0002-3424-3911","position":1,"is_corresponding":false},{"id":521027,"name":"Kathryn M. Porter","orcid":"0000-0003-1930-9625","position":2,"is_corresponding":false},{"id":1252242,"name":"Thyvu Mai","orcid":null,"position":3,"is_corresponding":false},{"id":404896,"name":"Wylie Burke","orcid":"0000-0003-2914-0560","position":4,"is_corresponding":false},{"id":14984,"name":"Stephanie Russo Carroll","orcid":"0000-0002-8996-8071","position":5,"is_corresponding":false},{"id":1593058,"name":"Nanibaa' A. Garrison","orcid":null,"position":0,"is_corresponding":false}],"reference_count":0,"raw_metadata":{"has_enrichment":true,"resolved":true,"title":"Access and Management: Indigenous Perspectives on Genomic Data Sharing","abstract":"<jats:p>As genomic researchers are encouraged to engage in broad genomic data shar­ing, American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) leaders have raised questions about ownership of data and biospecimens and concerns over emerging challenges and potential threats to tribal sovereignty. Using a community-engaged research approach, we conducted 42 semi-structured interviews with tribal lead­ers, clinicians, researchers, policy makers, and tribal research review board members about their perspectives on ethical issues related to genetics in AI/AN/NH communi­ties. We report findings related to perspec­tives on genetic research, data sharing, and envisioning stronger oversight and manage­ment of data. In particular, participants voiced concerns about different models of data sharing, infrastructure and logistics for housing data, and who should have authority to grant access to data. The results will ultimately guide policy-making and the creation of guidelines and new strategies for tribes to drive the research agenda and promote ethically and culturally appropriate research.Ethn Dis.2019;29(Suppl 3):659-668;doi:10.18865/ed.29.S3.659</jats:p>","is_dataset_classified":null,"base_score":4.2626798770413155,"endowment":4.2626798770413155,"datacite_reuse_total":0,"file_count":0,"downloads":0,"views":0,"has_version_chain":false,"is_dataset":false,"is_oa":false,"pmid":"31889771","pmcid":"PMC6919970","openalex_id":"https://openalex.org/W2995104748","authors":[],"funders":[{"funder_name":"NHGRI NIH HHS","grant_id":"K01 HG008818","title":null},{"funder_name":"NHGRI NIH HHS","grant_id":"R01 HG008605","title":null},{"funder_name":"NIEHS NIH HHS","grant_id":"P50 ES026089","title":null}],"total_grants":3,"fwci":6.1634,"citation_percentile":0.96772592,"influential_citations":0,"citation_trend":[{"year":2019,"count":1},{"year":2020,"count":6},{"year":2021,"count":12},{"year":2022,"count":10},{"year":2023,"count":20},{"year":2024,"count":8},{"year":2025,"count":5},{"year":2026,"count":8}],"oa_status":"hybrid","license":"other-oa","oa_locations":[{"url":"https://www.ethndis.org/edonline/index.php/ethndis/article/download/1230/1701","host_type":"journal"},{"url":"https://www.ethndis.org/edonline/index.php/ethndis/article/download/1230/1701","host_type":"publisher"},{"url":"https://www.ethndis.org/edonline/index.php/ethndis/article/viewFile/1230/1701","host_type":"publisher"},{"url":"https://www.ethndis.org/edonline/index.php/ethndis/article/viewFile/1230/1714","host_type":"publisher"},{"url":"https://doi.org/10.18865/ed.29.s3.659","host_type":"journal"},{"url":"https://pubmed.ncbi.nlm.nih.gov/31889771","host_type":"repository"},{"url":"https://www.ncbi.nlm.nih.gov/pmc/articles/6919970","host_type":"repository"}],"fields_of_study":["Ethics in Clinical Research","Biomedical Ethics and Regulation","Race, Genetics, and Society","Genetic Research","Humans","Indigenous Peoples","Information Dissemination","Medicine, Traditional","Metagenomics","Policy Making","Social Perception","United States"],"mesh_terms":["Indigenous Peoples","Humans","Medicine, Traditional","Policy Making","Social Perception","United States","Information Dissemination","Genetic Research","Metagenomics"],"keywords":["Indigenous","Data sharing","Public relations","Genetic data","Data management","Indian country","Sovereignty","Political science","Knowledge management","Sociology","Medicine","Alternative medicine","Computer science","Genomic Data Sharing","Tribal Sovereignty"],"sdg_mappings":[{"sdg_number":0,"sdg_label":"Industry, innovation and infrastructure"},{"sdg_number":0,"sdg_label":"Partnerships for the goals"}],"linked_datasets":[],"clinical_trials":[],"software_tools":[],"database_accessions":[],"source":"live","citation_network_status":"fetched"},"created_at":"2026-08-03T02:22:23.277652Z","pmid":null,"pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}