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超越个体:以社区为中心增加生物医学研究多样性的方法。

Beyond the Individual: Community-Centric Approaches to Increase Diversity in Biomedical Research.

作者信息

Brown Karen E, Fohner Alison E, Woodahl Erica L

机构信息

L.S. Skaggs Institute for Health Innovation, University of Montana, Missoula, Montana, USA.

Department of Biomedical and Pharmaceutical Sciences, University of Montana, Missoula, Montana, USA.

出版信息

Clin Pharmacol Ther. 2023 Mar;113(3):509-517. doi: 10.1002/cpt.2808. Epub 2022 Dec 15.


DOI:10.1002/cpt.2808
PMID:36448873
Abstract

Community-centric approaches to engage underrepresented populations-including community engagement, community-level consent practices, and capacity development for research-are means to enhance diversity in biomedical research populations in a more ethical way. Low diversity is a known problem in biomedical research that presents challenges in translating the benefits of research to the global population. Through long-term partnerships built on trust and collaboration, communities who would otherwise avoid research may be more willing to participate. When communities are engaged in research as partners and research questions are motivated by community health priorities, research is more meaningful and research methods are more respectful. Conversely, a lack of consultation throughout the research process can further alienate the very communities that these efforts are designed to engage. A number of underserved populations-for example American Indian and Alaska Native peoples-may value the benefits of research to a community equally or more than individual benefits. A community's autonomy must be considered, particularly when that community is not adequately protected by traditional informed consent processes. Opportunities for capacity development to support collaborative partnerships between communities and researchers are required to support engagement and understanding of the research process. Changes to research processes and infrastructure that encourage a higher level of research oversight within the community should be supported. In this paper, we present approaches that may improve diversity and equitable access to research and the delivery of health innovations for people that have historically been left out of biomedical research.

摘要

以社区为中心的方法来吸引代表性不足的人群,包括社区参与、社区层面的同意程序以及研究能力发展,是以更符合伦理道德的方式提高生物医学研究人群多样性的手段。生物医学研究中多样性低是一个已知问题,这在将研究成果转化为全球人群的益处方面带来了挑战。通过建立在信任与合作基础上的长期伙伴关系,那些原本会回避研究的社区可能会更愿意参与。当社区作为伙伴参与研究且研究问题由社区健康优先事项驱动时,研究更有意义,研究方法也更具尊重性。相反,在整个研究过程中缺乏协商可能会进一步疏远这些努力旨在吸引的社区。一些服务不足的人群,例如美国印第安人和阿拉斯加原住民,可能同等重视或更重视研究对社区的益处而非个人益处。必须考虑社区的自主权,尤其是当该社区未得到传统知情同意程序的充分保护时。需要有能力发展的机会来支持社区与研究人员之间的合作关系,以促进对研究过程的参与和理解。应支持对研究过程和基础设施进行变革,以鼓励在社区内进行更高水平的研究监督。在本文中,我们提出了一些方法,这些方法可能会改善多样性,并为那些历史上被排除在生物医学研究之外的人群提供公平的研究机会以及健康创新成果。

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本文引用的文献

[1]
A Framework for Promoting Diversity, Equity, and Inclusion in Genetics and Genomics Research.

JAMA Health Forum. 2022-4

[2]
Importance of Including Non-European Populations in Large Human Genetic Studies to Enhance Precision Medicine.

Annu Rev Biomed Data Sci. 2022-8-10

[3]
Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation.

J Empir Res Hum Res Ethics. 2022-7

[4]
Precision medicine research with American Indian and Alaska Native communities: Results of a deliberative engagement with tribal leaders.

Genet Med. 2022-3

[5]
Striving for Diversity in Research Studies.

N Engl J Med. 2021-10-7

[6]
COVID-19 vaccine hesitancy: Race/ethnicity, trust, and fear.

Clin Transl Sci. 2021-11

[7]
Assessment of the Inclusion of Racial/Ethnic Minority, Female, and Older Individuals in Vaccine Clinical Trials.

JAMA Netw Open. 2021-2-1

[8]
Efficacy and Safety of the mRNA-1273 SARS-CoV-2 Vaccine.

N Engl J Med. 2021-2-4

[9]
Safety and Efficacy of the BNT162b2 mRNA Covid-19 Vaccine.

N Engl J Med. 2020-12-31

[10]
The GWAS Diversity Monitor tracks diversity by disease in real time.

Nat Genet. 2020-3

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