关于精准医学研究的部落商议:解决民主商议设计和评估中的多样性和不公平问题。

IF 1.7 4区 哲学 Q2 ETHICS Journal of Empirical Research on Human Research Ethics Pub Date : 2022-07-01 Epub Date: 2022-02-28 DOI:10.1177/15562646221081267
Erika Blacksher, Susan Brown Trinidad, R Brian Woodbury, Scarlett E Hopkins, Erica L Woodahl, Bert B Boyer, Wylie Burke, Vanessa Hiratsuka
{"title":"关于精准医学研究的部落商议:解决民主商议设计和评估中的多样性和不公平问题。","authors":"Erika Blacksher, Susan Brown Trinidad, R Brian Woodbury, Scarlett E Hopkins, Erica L Woodahl, Bert B Boyer, Wylie Burke, Vanessa Hiratsuka","doi":"10.1177/15562646221081267","DOIUrl":null,"url":null,"abstract":"<p><p>Deliberative democratic engagement is used around the globe to gather informed public input on contentious collective questions. Yet, rarely has it been used to convene individuals exclusively from Indigenous communities. The relative novelty of using this approach to engage tribal communities and concerns about diversity and inequities raise important methodological questions. We describe the design and quality outcomes for a 2.5-day deliberation that elicited views of American Indian and Alaska Native (AIAN) leaders about the potential value and ethical conduct of precision medicine research (PMR), an emerging approach to research that investigates the health effects of individual genetic variation in tandem with variation in health-relevant practices, social determinants, and environmental exposures. The event met key goals, such as relationship and rapport formation, cross-site learning, equality of opportunity to participate, and respect among participants in the context of disagreement.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7000,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9173705/pdf/nihms-1777095.pdf","citationCount":"1","resultStr":"{\"title\":\"Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation.\",\"authors\":\"Erika Blacksher, Susan Brown Trinidad, R Brian Woodbury, Scarlett E Hopkins, Erica L Woodahl, Bert B Boyer, Wylie Burke, Vanessa Hiratsuka\",\"doi\":\"10.1177/15562646221081267\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>Deliberative democratic engagement is used around the globe to gather informed public input on contentious collective questions. Yet, rarely has it been used to convene individuals exclusively from Indigenous communities. The relative novelty of using this approach to engage tribal communities and concerns about diversity and inequities raise important methodological questions. We describe the design and quality outcomes for a 2.5-day deliberation that elicited views of American Indian and Alaska Native (AIAN) leaders about the potential value and ethical conduct of precision medicine research (PMR), an emerging approach to research that investigates the health effects of individual genetic variation in tandem with variation in health-relevant practices, social determinants, and environmental exposures. The event met key goals, such as relationship and rapport formation, cross-site learning, equality of opportunity to participate, and respect among participants in the context of disagreement.</p>\",\"PeriodicalId\":50211,\"journal\":{\"name\":\"Journal of Empirical Research on Human Research Ethics\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":1.7000,\"publicationDate\":\"2022-07-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9173705/pdf/nihms-1777095.pdf\",\"citationCount\":\"1\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Empirical Research on Human Research Ethics\",\"FirstCategoryId\":\"98\",\"ListUrlMain\":\"https://doi.org/10.1177/15562646221081267\",\"RegionNum\":4,\"RegionCategory\":\"哲学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2022/2/28 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q2\",\"JCRName\":\"ETHICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Empirical Research on Human Research Ethics","FirstCategoryId":"98","ListUrlMain":"https://doi.org/10.1177/15562646221081267","RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2022/2/28 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"ETHICS","Score":null,"Total":0}
引用次数: 1

摘要

慎思民主参与在全球各地都被用来收集公众对有争议的集体问题的知情意见。然而,这种方法很少被用来召集专门来自土著社区的个人。使用这种方法让部落社区参与进来相对比较新颖,而且人们对多样性和不平等的关注也提出了重要的方法问题。我们介绍了一次为期 2.5 天的讨论的设计和质量成果,这次讨论征求了美国印第安人和阿拉斯加原住民 (AIAN) 领导人对精准医学研究 (PMR) 的潜在价值和道德行为的看法,PMR 是一种新兴的研究方法,它研究个体基因变异对健康的影响,同时研究与健康相关的实践、社会决定因素和环境暴露的变异。此次活动实现了一些关键目标,如建立关系和默契、跨站点学习、平等参与机会以及在存在分歧的情况下尊重参与者。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation.

Deliberative democratic engagement is used around the globe to gather informed public input on contentious collective questions. Yet, rarely has it been used to convene individuals exclusively from Indigenous communities. The relative novelty of using this approach to engage tribal communities and concerns about diversity and inequities raise important methodological questions. We describe the design and quality outcomes for a 2.5-day deliberation that elicited views of American Indian and Alaska Native (AIAN) leaders about the potential value and ethical conduct of precision medicine research (PMR), an emerging approach to research that investigates the health effects of individual genetic variation in tandem with variation in health-relevant practices, social determinants, and environmental exposures. The event met key goals, such as relationship and rapport formation, cross-site learning, equality of opportunity to participate, and respect among participants in the context of disagreement.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
CiteScore
3.50
自引率
7.70%
发文量
30
审稿时长
>12 weeks
期刊介绍: The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.
期刊最新文献
Comparison of Instructions to Authors and Reporting of Ethics Components in Selected African Biomedical Journals: 2008 and 2017. How Making Consent Procedures More Interactive can Improve Informed Consent: An Experimental Study and Replication. An Example of a Clinical Research Ethics Committee in Türkiye: Types of Studies Analysed, Their Phases and Investigators. Decision-Making Capabilities of Artificial Intelligence Platforms as Institutional Review Board Members: Comment. Perceptions of the Research Integrity Climate in Egyptian Universities: A Survey Among Academic Researchers.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1