Ethical Legal and Social Dimensions of Human Microbiome Research

人类微生物组研究的伦理法律和社会维度

• 批准号: 7888380
• 负责人: Amy L McGuire
• 金额: $ 35.83万
• 依托单位: BAYLOR COLLEGE OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-07-10 至 2012-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7888380
• 关键词: Bacteria; Code; Collection; Dimensions; Disease; Educational workshop; Environment; Ethical Analysis; Ethics; Feedback; Female; Funding; Future; Goals; Health; Human; Human Microbiome; Individual; Interview; Investigation; Learning; Life; Medicine; Methods; Organism; Participant; Pattern; Perception; Phase; Recommendation; Recruitment Activity; Research; Research Personnel; Scientist; Surveys; Thinking; United States National Institutes of Health; Virus; base; college; comparative; ethical legal social implication; experience; human subject protection; male; member; microbial; public health relevance; social; sound

DESCRIPTION (provided by applicant): We propose an exploratory survey, parallel to the Human Microbiome Project (HMP), of the emergent ethical, legal, and social issues associated with human microbiome research. We will implement this study using in- depth interviews with key stakeholders in the HMP, including individuals who are recruited to the HMP but decline participation, study participants, and investigators and project leaders involved in planning for an conducting the first phases of the HMP. The overall goal of this project is to identify and analyze ethical, legal, and social issues related to human microbiome research and to develop ethically sound and empirically informed strategies for managing these issues in future research. This project has three Specific Aims: (1) Describe recruits and participants' ideas about the HMP (and participants' experiences of the HMP) as it relates to them physically, socially, and culturally and as it relates to their notions of health and disease, (2) Describe the ethical, legal, and social challenges of conducting the HMP from the perspective of study investigators and project leaders at the NIH, and (3) Provide a forum for interdisciplinary exchange with representative stakeholders (including study participants, members of the research team, and outside experts) to develop recommendations for the responsible management of ethical, legal, and social issues identified in Specific Aims 1 and 2. PUBLIC HEALTH RELEVANCE: The Human Microbiome Project (HMP) is a large study to learn more about the collections of bacteria, viruses and other tiny organisms that live in and on our bodies. We will interview three groups of people: (1) those who are asked to participate in the HMP but say no, in order find out why they said no, (2) those who decide to participate in the HMP, in order to explore their thoughts about the project and their experience with participating in the project, and (3) scientists who are conducting the HMP, in order to understand what ethical or social issues are related to this type of research. We will also host a workshop with members of our research team, study participants, and outside experts to discuss the issues that were identified in the interviews and develop recommendations for managing them.

描述（由申请人提供）：我们提议与人类微生物组项目 (HMP) 并行地进行一项探索性调查，调查与人类微生物组研究相关的新兴伦理、法律和社会问题。我们将通过与 HMP 的主要利益相关者进行深入访谈来实施这项研究，其中包括被招募到 HMP 但拒绝参与的个人、研究参与者以及参与规划实施 HMP 第一阶段的研究人员和项目负责人。该项目的总体目标是识别和分析与人类微生物组研究相关的伦理、法律和社会问题，并制定符合伦理且基于经验的策略来管理未来研究中的这些问题。该项目有三个具体目标：(1) 描述新兵和参与者对 HMP 的看法（以及参与者对 HMP 的体验），因为它与他们的身体、社会和文化以及健康和疾病的概念有关，(2) 从 NIH 的研究调查人员和项目负责人的角度描述进行 HMP 的伦理、法律和社会挑战，以及 (3) 提供一个与代表性利益相关者（包括研究参与者、项目成员）进行跨学科交流的论坛。研究团队，和外部专家）为具体目标 1 和 2 中确定的道德、法律和社会问题的负责任管理制定建议。 公共卫生相关性：人类微生物组计划 (HMP) 是一项大型研究，旨在了解有关细菌收集的更多信息、病毒和其他生活在我们体内和身体上的微小生物体。我们将采访三组人：（1）那些被要求参加 HMP 但拒绝的人，以找出他们拒绝的原因；（2）那些决定参加 HMP 的人，以探究他们的想法对项目的想法以及他们参与该项目的经验，以及（3）正在进行 HMP 的科学家，以了解与此类研究相关的伦理或社会问题。我们还将与我们的研究团队成员、研究参与者和外部专家举办研讨会，讨论访谈中发现的问题并提出管理这些问题的建议。