University of California, 9500 Gilman Drive #0507, La Jolla, San Diego, CA, 92093, USA.
, San Diego, USA.
BMC Med Res Methodol. 2022 Sep 2;22(1):237. doi: 10.1186/s12874-022-01713-7.
Public health research frequently relies on collaborations with community-based organizations, and these partnerships can be essential to the success of a project. However, while public health ethics and oversight policies have historically focused on ensuring that individual subjects are protected from unethical or unfair practices, there are few guidelines to protect the organizations which facilitate relationships with - and are frequently composed of - these same vulnerable populations. As universities, governments, and donors place a renewed emphasis on the need for community engaged research to address systematic drivers of health inequity, it is vital that the ways in which research is conducted does not uphold the same intersecting systems of gender, race, and class oppression which led to the very same health inequities of interest.
To understand how traditional notions of public health research ethics might be expanded to encompass partnerships with organizations as well as individuals, we conducted qualitative interviews with 39 staff members (executive directors and frontline) at community-based organizations that primarily serve people who use drugs, Black men who have sex with men, and sex workers across the United States from January 2016 - August 2017. We also conducted 11 in-depth interviews with professional academic researchers with experience partnering with CBOs that serve similar populations. Transcripts were analyzed thematically using emergent codes and a priori codes derived from the Belmont Report.
The concepts of respect, beneficence, and justice are a starting point for collaboration with CBOs, but participants deepened them beyond traditional regulatory concepts to consider the ethics of relationships, care, and solidarity. These concepts could and should apply to the treatment of organizations that participate in research just as they apply to individual human subjects, although their implementation will differ when applied to CBOs vs individual human subjects.
Academic-CBO partnerships are likely to be more successful for both academics and CBOs if academic researchers work to center individual-level relationship building that is mutually respectful and grounded in cultural humility. More support from academic institutions and ethical oversight entities can enable more ethically grounded relationships between academic researchers, academic institutions, and community based organizations.
公共卫生研究经常依赖于与社区组织的合作，这些伙伴关系对于项目的成功至关重要。然而，尽管公共卫生伦理和监督政策历史上一直侧重于确保个体受试者免受不道德或不公平做法的侵害，但几乎没有指导方针来保护那些促进与同样脆弱群体建立关系并经常由这些群体组成的组织。随着大学、政府和捐助者重新强调需要进行社区参与研究来解决健康不平等的系统性驱动因素，至关重要的是，研究的开展方式不会维护导致同样利益相关的健康不平等的性别、种族和阶级压迫的交叉系统。
为了了解如何将传统的公共卫生研究伦理观念扩展到涵盖与组织以及个人的伙伴关系，我们于 2016 年 1 月至 2017 年 8 月期间对美国各地主要为使用毒品的人、与男性发生性关系的黑人男性和性工作者服务的社区组织的 39 名工作人员（执行主任和一线人员）进行了定性访谈，并对具有与服务类似人群的 CBO 合作经验的 11 名专业学术研究人员进行了深入访谈。使用新兴代码和源自贝尔蒙报告的先验代码对转录本进行主题分析。
尊重、善行和正义的概念是与 CBO 合作的起点，但参与者将它们深化到传统监管概念之外，以考虑关系、关怀和团结的伦理。这些概念可以并且应该适用于参与研究的组织，就像它们适用于个体人类受试者一样，尽管将它们应用于 CBO 与个体人类受试者时会有所不同。
如果学术研究人员努力以相互尊重和基于文化谦逊的个体层面关系建设为中心，那么学术-CBO 伙伴关系对于学术人员和 CBO 都更有可能取得成功。学术机构和伦理监督实体提供更多支持，可以在学术研究人员、学术机构和社区组织之间建立更具道德基础的关系。
