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社区参与在促进研究参与者对药物基因组学研究结果的理解中的作用:参与 HIV/AIDS 研究和治疗的利益相关者的观点。

The role of community engagement in promoting research participants' understanding of pharmacogenomic research results: Perspectives of stakeholders involved in HIV/AIDS research and treatment.

机构信息

Department of Anatomy, College of Health Sciences, Makerere University, Kampala, Uganda.

Infectious Diseases Institute, College of Health Sciences, Makerere University, Kampala, Uganda.

出版信息

PLoS One. 2024 Apr 2;19(4):e0299081. doi: 10.1371/journal.pone.0299081. eCollection 2024.


DOI:10.1371/journal.pone.0299081
PMID:38564575
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10986979/
Abstract

Community engagement (CE) is praised to be a powerful vehicle in empowering communities with knowledge and skills to make informed decisions for better health care. Several CE approaches have been proposed to improve participants' and research communities' understanding of genomic research including pharmacogenomic information and results. However, there is limited literature on how these approaches can be used to communicate findings of pharmacogenomic research to communities of people living with HIV. This study explored stakeholders' perspectives on the role of community engagement in promoting understanding of pharmacogenomic research results among people living with HIV. We adopted a qualitative approach that involved 54 stakeholders between September 2021 and February 2022. We held five focus group discussions among 30 community representatives from five research institutions, 12 key informant interviews among researchers, and 12 in-depth interviews among ethics committee members. A thematic approach was used to analyze the results. Five themes merged from this data and these included (i) benefits of engaging communities prior to returning individual pharmacogenomic research results to participants. (ii) Obtaining community consensus on the kinds of pharmacogenomic results to be returned. (iii) Opinions on how pharmacogenomic research information and results should be communicated at community and individual levels. (iv) Perceived roles of community stakeholders in promoting participants' understanding and utilization of pharmacogenomic research results. (v) Perceived challenges of engaging communities when returning individual results to research participants. Stakeholders opined that CE facilitates co-learning between researchers and research communities. Researchers can adapt existing CE approaches that are culturally acceptable for meaningful engagement with minimal ethical and social risks when communicating pharmacogenomic research results. CE approaches can facilitate understanding of pharmacogenomic research and findings among research participants and communities. Therefore, if creatively adapted, existing and new CE approaches can enable researchers to communicate simple and understandable results of pharmacogenomic research.

摘要

社区参与(CE)被称赞为一种强大的手段,可以为社区提供知识和技能,使他们能够做出明智的决策,以改善医疗保健。已经提出了几种 CE 方法来提高参与者和研究社区对基因组研究的理解,包括药物基因组学信息和结果。然而,关于如何使用这些方法将药物基因组学研究结果传达给艾滋病毒感染者社区,文献有限。本研究探讨了利益攸关方对社区参与在促进艾滋病毒感染者对药物基因组学研究结果的理解中的作用的看法。我们采用了一种定性方法,涉及 2021 年 9 月至 2022 年 2 月的 54 名利益攸关方。我们在五个研究机构的 30 名社区代表之间举行了五次焦点小组讨论,在研究人员之间进行了 12 次重点人员访谈,在伦理委员会成员之间进行了 12 次深入访谈。采用主题方法对结果进行分析。从这些数据中合并了五个主题,包括(i)在向参与者返还个体药物基因组学研究结果之前,让社区参与的好处。(ii)就应返还的药物基因组学结果种类获得社区共识。(iii)关于在社区和个人层面上应如何传达药物基因组学研究信息和结果的意见。(iv)社区利益攸关方在促进参与者理解和利用药物基因组学研究结果方面的作用。(v)在向研究参与者返还个体结果时,让社区参与的感知挑战。利益攸关方认为,CE 促进了研究人员和研究社区之间的共同学习。研究人员可以在与社区进行有意义的接触时,适应现有的 CE 方法,这些方法在文化上是可以接受的,并且风险最小,当沟通药物基因组学研究结果时,会有伦理和社会风险。CE 方法可以促进研究参与者和社区对药物基因组学研究和发现的理解。因此,如果创造性地适应,现有的和新的 CE 方法可以使研究人员能够传达药物基因组学研究的简单和可理解的结果。

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引用本文的文献

[1]
Perspectives of Research Ethics Committees on the Challenges of Human Genomic Research Participation in Ethiopia.

J Empir Res Hum Res Ethics. 2025-7

本文引用的文献

[1]
Research Participants' Preferences for Individual Results of Pharmacogenomics Research: A Case of a Ugandan HIV Research Institute.

J Empir Res Hum Res Ethics. 2023-10

[2]
Network expansion of genetic associations defines a pleiotropy map of human cell biology.

Nat Genet. 2023-3

[3]
Reducing HIV-related stigma among young people attending school in Northern Uganda: study protocol for a participatory arts-based population health intervention and stepped-wedge cluster-randomized trial.

Trials. 2022-12-23

[4]
Feedback of individual genetic and genomics research results: A qualitative study involving grassroots communities in Uganda.

PLoS One. 2022

[5]
Addressing underrepresentation in genomics research through community engagement.

Am J Hum Genet. 2022-9-1

[6]
Perspectives and experiences of researchers regarding feedback of incidental genomic research findings: A qualitative study.

PLoS One. 2022

[7]
Whole Exome Sequencing in South Africa: Stakeholder Views on Return of Individual Research Results and Incidental Findings.

Front Genet. 2022-6-8

[8]
Considerations of Autonomy in Guiding Decisions around the Feedback of Individual Genetic Research Results from Genomics Research: Expectations of and Preferences from Researchers in Botswana.

Glob Health Epidemiol Genom. 2022

[9]
Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study.

BMC Med Ethics. 2022-3-18

[10]
Pulsing bodies and embodying pulse: musical effervescence in a South African HIV/AIDS community outreach program.

Anthropol Med. 2022-9

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