Alaska Native people's perceptions, understandings, and expectations for research involving biological specimens
Objectives. Members 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...
Published in: | International Journal of Circumpolar Health |
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Taylor & Francis Group
2012
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Online Access: | https://doi.org/10.3402/ijch.v71i0.18642 https://doaj.org/article/38caf964a60d4915bd410d9acb7f90a2 |
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ftdoajarticles:oai:doaj.org/article:38caf964a60d4915bd410d9acb7f90a2 2023-05-15T15:10:11+02:00 Alaska Native people's perceptions, understandings, and expectations for research involving biological specimens Vanessa Y. Hiratsuka Jennifer K. Brown Theresa J. Hoeft Denise A. Dillard 2012-05-01T00:00:00Z https://doi.org/10.3402/ijch.v71i0.18642 https://doaj.org/article/38caf964a60d4915bd410d9acb7f90a2 EN eng Taylor & Francis Group http://www.circumpolarhealthjournal.net/index.php/ijch/article/view/18642/pdf_1 https://doaj.org/toc/2242-3982 doi:10.3402/ijch.v71i0.18642 2242-3982 https://doaj.org/article/38caf964a60d4915bd410d9acb7f90a2 International Journal of Circumpolar Health, Vol 71, Iss 0, Pp 1-6 (2012) Alaska Indians North America focus groups research ethics informed consent results dissemination Arctic medicine. Tropical medicine RC955-962 article 2012 ftdoajarticles https://doi.org/10.3402/ijch.v71i0.18642 2022-12-31T06:34:03Z Objectives. Members 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 design. Stratified focus groups. Methods. Twenty-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 conclusions. Alaska 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. Article in Journal/Newspaper Arctic Circumpolar Health International Journal of Circumpolar Health Alaska Directory of Open Access Journals: DOAJ Articles Arctic International Journal of Circumpolar Health 71 1 18642 |
institution |
Open Polar |
collection |
Directory of Open Access Journals: DOAJ Articles |
op_collection_id |
ftdoajarticles |
language |
English |
topic |
Alaska Indians North America focus groups research ethics informed consent results dissemination Arctic medicine. Tropical medicine RC955-962 |
spellingShingle |
Alaska Indians North America focus groups research ethics informed consent results dissemination Arctic medicine. Tropical medicine RC955-962 Vanessa Y. Hiratsuka Jennifer K. Brown Theresa J. Hoeft Denise A. Dillard Alaska Native people's perceptions, understandings, and expectations for research involving biological specimens |
topic_facet |
Alaska Indians North America focus groups research ethics informed consent results dissemination Arctic medicine. Tropical medicine RC955-962 |
description |
Objectives. Members 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 design. Stratified focus groups. Methods. Twenty-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 conclusions. Alaska 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. |
format |
Article in Journal/Newspaper |
author |
Vanessa Y. Hiratsuka Jennifer K. Brown Theresa J. Hoeft Denise A. Dillard |
author_facet |
Vanessa Y. Hiratsuka Jennifer K. Brown Theresa J. Hoeft Denise A. Dillard |
author_sort |
Vanessa Y. Hiratsuka |
title |
Alaska Native people's perceptions, understandings, and expectations for research involving biological specimens |
title_short |
Alaska Native people's perceptions, understandings, and expectations for research involving biological specimens |
title_full |
Alaska Native people's perceptions, understandings, and expectations for research involving biological specimens |
title_fullStr |
Alaska Native people's perceptions, understandings, and expectations for research involving biological specimens |
title_full_unstemmed |
Alaska Native people's perceptions, understandings, and expectations for research involving biological specimens |
title_sort |
alaska native people's perceptions, understandings, and expectations for research involving biological specimens |
publisher |
Taylor & Francis Group |
publishDate |
2012 |
url |
https://doi.org/10.3402/ijch.v71i0.18642 https://doaj.org/article/38caf964a60d4915bd410d9acb7f90a2 |
geographic |
Arctic |
geographic_facet |
Arctic |
genre |
Arctic Circumpolar Health International Journal of Circumpolar Health Alaska |
genre_facet |
Arctic Circumpolar Health International Journal of Circumpolar Health Alaska |
op_source |
International Journal of Circumpolar Health, Vol 71, Iss 0, Pp 1-6 (2012) |
op_relation |
http://www.circumpolarhealthjournal.net/index.php/ijch/article/view/18642/pdf_1 https://doaj.org/toc/2242-3982 doi:10.3402/ijch.v71i0.18642 2242-3982 https://doaj.org/article/38caf964a60d4915bd410d9acb7f90a2 |
op_doi |
https://doi.org/10.3402/ijch.v71i0.18642 |
container_title |
International Journal of Circumpolar Health |
container_volume |
71 |
container_issue |
1 |
container_start_page |
18642 |
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1766341231377383424 |