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中文摘要
翻译
人口健康和健康差异中心(CPHHD)研究模型以其 明确的重点是跨学科调查的多层次决定因素的健康差距,从一个 人口视角。健康差距本身就引起了一些紧迫的道德和政策问题, 关于疾病风险不平等分布的问题。追求复杂的跨学科方法 还提出了一系列与负责任的研究实践有关的问题,特别是在调查重点 关于具有重大健康需求和研究积极合作能力有限的弱势群体的报告。要最有效地解决这些问题和相关问题,就必须提供一个专门的支助核心,在经验研究和政策制定方面具有专门知识,因为这涉及负责任地开展跨学科、以人口为基础的生物医学研究。为了支持CPHHD的工作,伦理和政策核心因此将:(1)在拉丁美洲健康差异研究中进行与伦理和政策问题相关的经验研究;(2)促进地方,区域和国家政策的制定,以开展和传播与拉丁美洲健康相关的研究;和(3)提供咨询,资源和培训有关负责任的行为跨生殖健康差距的研究,重点是拉丁美洲乳腺癌的决定因素。关于目标1,核心调查人员将进行定性研究,重点调查拉丁裔参与CPHHD研究的态度和信仰。访谈和焦点小组将用于探索参与的原因,对研究的近期和长期利益的期望,对研究相关风险的看法,以及对接收中心投资过程中产生的结果的偏好。关于目标2,作为目标1活动的一部分收集的数据将用于为研究政策的制定提供信息,既可以在当地为CPHHD提供信息,也可以与同一机制资助的其他中心的伦理和政策核心合作。政策制定将侧重于鼓励能够以严格和文化上适当的方式实施的最有效的研究战略。最后,关于目标3,核心将为中心调查人员提供所需的支持,以设计和实施其计划的调查。支持可能包括关于所需社区咨询的性质和时间、知情同意、研究设计、研究传播或研究过程中可能出现的任何其他问题的建议。还将应要求提供与具体负责任地开展研究课题有关的培训。这些活动有望加强和扩大该中心的科学成就。
英文摘要
The Centerfor Populafion Health and Health Disparities (CPHHD) Research Model is notable for its explicit focus on the transdiscipiinary investigation of multilevel determinants of health disparities from a population perspective. Health disparities, in and of themselves, raise a number of pressing ethical and policy questions about the unequal distribution of disease risk. The pursuit of complex transdiscipiinary approaches also raise a host of concerns related to responsible research pracfice, particulariy when investigafion focuses on vulnerable communifies with significant health needs and limited capacity for active collaboration in research. These and related considerafions can be most effectively addressed by provision of a dedicated support core with expertise in empirical research and policy development as it pertains to the responsible conduct of transdiscipiinary, population-based, biomedical research. To support the work of the CPHHD, the Ethics and Policy Core therefore will: (1) conduct empiric research related to ethical and policy concerns in Latina health disparities research; (2) contribute to local, regional, and national policy development with regard to the conduct and dissemination of research relevant to Latino health disparifies; and (3) provide advice, resources, and training regarding the responsible conduct of transdiscipiinary health disparities research focused on the determinants of breast cancer among Latinas. With regard to Aim 1, core invesfigators will conduct qualitafive research focused on invesfigafing the attitudes and beliefs of Latinas approached with respect to participation in the research of the CPHHD. Interviews and focus groups will be used to explore reasons for participation, expectations regarding the near and longer-term benefits of research, perceptions regarding research-related risks, and preferences with respect to receiving results generated in the course of Center invesfigations. With regard to Aim 2, data collected as part ofthe activities of Aim 1 will be used to inform research policy development, both locally for the CPHHD as well as in collaboration with the ethics and policy cores of other Centers funded under the same mechanism. Policy development will focus on encouraging maximally effective research strategies which can be implemented in a rigorous and culturally appropriate manner. Finally, with regard to Aim 3, the core will provide required support to Center invesfigators with respect to the design and conduct of their planned investigations. Support may include advice with regard to the nature and timing of required community consultation, informed consent, study design, research dissemination, or any other concerns which may arise in the course of research. Training related to specific responsible conduct of research topics will also be available on request. These activities promise to strengthen and extend the scientific achievements of the Center.
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Evolving Our Partnership: The CSER2 Centralized Support Coordinating Center
  • 批准号:
    10360348
  • 项目类别:
  • 资助金额:
    $92.52万
  • 财政年份:
    2021
  • 负责人:
    Stephanie Malia Fullerton
  • 依托单位:
Cloud-Based Biomedical Data Storage and Analysis: Implications for Trustworthy Governance
  • 批准号:
    10320454
  • 项目类别:
  • 资助金额:
    $19.44万
  • 财政年份:
    2020
  • 负责人:
    Stephanie Malia Fullerton
  • 依托单位:
Patient Safety in Genome Medicine: Learning from the Past to Safeguard the Future
  • 批准号:
    8621406
  • 项目类别:
  • 资助金额:
    $19.31万
  • 财政年份:
    2014
  • 负责人:
    Stephanie Malia Fullerton
  • 依托单位:
Evolving Our Partnership: The CSER2 Centralized Support Coordinating Center
  • 批准号:
    9907352
  • 项目类别:
  • 资助金额:
    $44.59万
  • 财政年份:
    2013
  • 负责人:
    Stephanie Malia Fullerton
  • 依托单位:
海外基金