Dataset Information

Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers.

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 becomes increasingly important to advancements in medicine, there is a risk that populations not meaningfully included in genomic research will not benefit from the outcomes of that research. AN people have historically been underrepresented in biomedical research; AN underrepresentation in genomics research is compounded by mistrust based on past abuses, concerns about privacy and data ownership, and cultural considerations specific to this type of research. Working together, the National Human Genome Research Institute and two Alaska Native health organizations, Southcentral Foundation and the Alaska Native Health Board, cosponsored a workshop in July 2018 to engage key stakeholders in discussion, strengthen relationships, and facilitate partnership and consideration of participation of AN people in community-driven biomedical and genomic research. AN priorities related to translation of genomics research to health and health care, return of genomic results, design of research studies, and data sharing were discussed. This report summarizes the perspectives that emerged from the dialogue and offers considerations for effective and socially responsible genomic research partnerships with AN communities.

SUBMITTER: Hiratsuka VY

PROVIDER: S-EPMC7708301 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers.

Hiratsuka Vanessa Y VY Hahn Michael J MJ Woodbury R Brian RB Hull Sara Chandros SC Wilson David R DR Bonham Vence L VL Dillard Denise A DA Avey Jaedon P JP Beckel-Mitchener Andrea C AC Blome Juliana J Claw Katrina K Ferucci Elizabeth D ED Gachupin Francine C FC Ghazarian Armen A Hindorff Lucia L Jooma Sonya S Trinidad Susan B SB Troyer Jennifer J Walajahi Hina H

Genetics in medicine : official journal of the American College of Medical Genetics 20200825 12

Meaningful engagement of Alaska Native (AN) tribes and tribal health organizations is essential in the conduct of socially responsible and ethical research. As genomics becomes increasingly important to advancements in medicine, there is a risk that populations not meaningfully included in genomic research will not benefit from the outcomes of that research. AN people have historically been underrepresented in biomedical research; AN underrepresentation in genomics research is compounded by mist ...[more]

PMID: 32839571

Similar Datasets

Project description:BackgroundBiomedical research is overseen by numerous Institutional Review Boards (IRBs) in Singapore but there has been no research that examines how the research review process is perceived by the local research community nor is there any systematic data on perceptions regarding the review process or other research ethics processes and IRB characteristics. The aim of this study was to ascertain general views regarding the overall perceived value of ethics review processes; to measure perceptions about local IRB functions and characteristics; to identify IRB functions and characteristics viewed as important; and to compare these views with those of other international studies.MethodsAn online survey was used with the main component being the IRB-Researcher Assessment Tool (IRB-RAT), a validated tool, to evaluate perceptions of ideal and actual IRB functions and characteristics held by Singaporean researchers and research support staff. Data were analysed descriptively first, with mean and SD of each item of IRB-RAT questionnaire reported, excluding the respondents whose answers were unknown or not applicable. The Wilcoxon Sign Rank test was used to compare the ideal and actual ratings of each IRB-RAT item, while the Mann-Whitney U test was used to compare the ratings of each IRB-RAT item between respondents with different characteristics. The Z-test was used to compare the mean ratings of our cohort with the mean ratings reported in the literature. The correlation between our mean ideal scores and those of two international studies also employing the IRB-RAT was examined.ResultsSeventy-one respondents completed the survey. This cohort generally held positive views of the impact of the ethics review process on: the quality of research; establishing and maintaining public trust in research; the protection of research participants; and on the scientific validity of research. The most important ideal IRB characteristics were timeliness, upholding participants' rights while also facilitating research, working with investigators to find solutions when there are disagreements, and not allowing biases to affect reviews. For almost all 45 IRB-RAT statements, the rating of the importance of the characteristic was higher than the rating of how much that characteristic was descriptive of IRBs the respondents were familiar with. There was a significant strong correlation between our study's scores on the ideal IRB characteristics and those of the first and largest published study that employed the IRB-RAT, the US National Validation (USNV) sample in Keith-Spiegel et al. [19].ConclusionsAn understanding of the perceptions held by Singaporean researchers and research support staff on the value that the ethics review process adds, their perceptions of actual IRB functions and characteristics as well as what they view as central to high functioning IRBs is the first step to considering the aspects of the review process that might benefit from improvements. This study provides insight into how our cohort compares to others internationally and highlights strengths and areas for improvement of Singapore IRBs as perceived by a small sample of the local research community. Such insights provide a springboard for additional research and may assist in further enhancing good relations so that both are working towards the same end.

Project description:ImportanceBoth citation and funding metrics converge in shaping current perceptions of academic success.ObjectiveTo evaluate what proportion of the most-cited US-based scientists are funded by biomedical federal agencies and whether funded scientists are more cited than nonfunded ones.Design, setting, and participantsThis survey study used linkage of a Scopus-based database on top-cited US researchers (according to a composite citation metric) and the National Institutes of Health RePORTER database of federal funding (33 biomedical federal agencies). Matching was based on name and institution. US-based top-cited scientists who were allocated to any of 69 scientific subfields highly related to biomedicine were considered in the main analysis. Data were downloaded on June 11, 2022.Main outcomes and measuresProportion of US-based top-cited biomedical scientists who had any (1996-2022), recent (2015-2022), and current (2021-2022) funding. Comparisons of funded and nonfunded scientists assessed total citations and a composite citation index.ResultsThere were 204 603 records in RePORTER (1996-2022) and 75 316 US-based top-cited scientists in the career-long citation database; 40 887 scientists were included in the main analysis. The proportion of US-based top-cited biomedical scientists (according to career-long citation impact) who had received any federal funding from biomedical research agencies was 62.7% (25 650 of 40 887) for any funding (1996-2022), 23.1% (9427 of 40 887) for recent funding (2015-2022), and 14.1% (5778 of 40 887) for current funding (2021-2022). Respective proportions were 64.8%, 31.4%, and 20.9%, for top-cited scientists according to recent single-year citation impact. There was large variability across scientific subfields (eg, current funding: 31% of career-long impact top-cited scientists in geriatrics, 30% in bioinformatics and 29% in developmental biology, but 0% in legal and forensic medicine, general psychology and cognitive sciences, and gender studies). Funded top-cited researchers were overall more cited than nonfunded top-cited scientists (median [IQR], 9594 [5650-1703] vs 5352 [3057-9890] citations; P < .001) and substantial difference remained after adjusting for subfield and years since first publication. Differences were more prominent in some specific biomedical subfields.Conclusions and relevanceIn this survey study, biomedical federal funding had offered support to approximately two-thirds of the top-cited biomedical scientists at some point during the last quarter century, but only a small minority of top-cited scientists had current federal biomedical funding. The large unevenness across subfields needs to be addressed with ways that improve equity, efficiency, excellence, and translational potential.

Dataset Information

Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers.

Publications

Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets