Ethical and Legal Challenges in Communicating Individual Biomonitoring and Person

描述（由申请人提供）：为了了解环境污染物如何影响健康，研究人员依赖于血液、尿液和其他组织的生物监测，以及个人空间的采样，例如测试家中的灰尘和空气。研究参与者通常想知道他们自己的结果。然而，对新出现的污染物，如许多内分泌干扰化合物（EDCs）的暴露测量，在了解健康影响、暴露源和减少暴露战略之前；因此，研究人员在交流结果方面面临挑战。与研究人员和研究参与者的访谈和研讨会表明，挑战包括根据个人和文化差异（包括科学素养）调整报告反馈；报告复杂的结果，许多分析没有压倒性的；提供背景资料，解释与健康和有效行动选择的关系；并支持大型研究的可扩展性，而不会变得客观或给研究人员带来负担。这些问题可以通过以用户为中心的个性化数字报告返回界面来解决。该联盟将(1)深入了解研究参与者的心智模式、能力和偏好；(2)利用这些知识开发一个界面，有效地传达个人结果，在研究过程中建立理解和信任，并传达有关EDCs的背景知识，以告知和激励基于证据的健康保护行动；(3)在疾病控制中心的公共住房研究中进行现场测试数字报告，这是一个服务不足的环境正义人群。该项目联盟是跨学科和多机构的，整合了环境健康科学、社会科学和计算机科学的知识和方法。为了设计有效的沟通，该项目通过与研究参与者的访谈来获取有关edc概念的信息，以及参与者的理解/误解与研究人员意图传达的信息之间的对应关系。为了设计用户界面，该项目使用上下文设计的人机交互方法，它依赖于观察和迭代的纸原型和可用性测试，以及价值敏感设计，它涉及访谈，以揭示影响界面采用的主要和少数价值观。将为疾控中心绿色住房研究开发纸质和数字报告材料，其中包括报告粉尘和尿液中的农药和邻苯二甲酸盐的模块，报告将纳入全球统一制度。在绿色住房研究（GHS）参与者收到书面或数字报告后，将对他们进行访谈，以比较这些方法的经验。过去的评价表明，有效的报告可以提高环境卫生知识，增加对研究的信任和参与科学的自豪感，并激励采取行动减少环境暴露和保护健康。该项目的结果将为主要的NIEHS队列研究和加州生物监测计划提供指导，法律要求报告个人结果。

DESCRIPTION (provided by applicant): To learn how environmental contaminants affect health, researchers rely on biomonitoring of blood, urine, and other tissues, and sampling in personal spaces, such as testing dust and air in homes. Study participants often want to learn their own results. Yet exposure measurements for emerging contaminants, such as many endocrine disrupting compounds (EDCs) precede understanding of the health implications, exposure sources, and strategies for exposure reduction; so researchers face challenges in communicating results. Interviews and a workshop with researchers and study participants revealed that challenges include tailoring report-back to individual and cultural differences, including science literacy; reporting complex results for many analytes without overwhelming; providing contextual information to explain the relevance to health and effective choices for action; and supporting scalability for large studies without becoming impersonal or burdening the researcher. These issues can be addressed by a user-centered personalized digital report-back interface. The consortium will (1) gain insights into mental models, abilities, and preferences of study participants; (2) use this knowledge to develop an interface that effectively communicates individual results, builds understanding and trust in the research process, and communicates contextual knowledge about EDCs to inform and motivate evidence-based health-protective action; and (3) field test digital report-back in a Centers for Disease Control study in public housing, an underserved environmental justice population. The project consortium is transdisciplinary and multi-institutional and integrates knowledge and methods from environmental health science, social science, and computer science. To design effective communications, the project uses interviews with study participants to elicit information about conceptualizations of EDCs and the correspondence between participants' understandings/misunderstandings and researchers' intended messages. To design the user interface, the project uses the human-computer interaction methods of Contextual Design, which relies on observations and iterative paper-prototyping and usability testing, and Value Sensitive Design, which involves interviews to reveal both predominant and minority values that affect adoption of the interface. Paper and digital report-back materials will be developed for the CDC Green Housing Study, with modules for reporting on pesticides and phthalates in dust and urine, and report-back will be fielded in the GHS. Interviews will be conducted with Green Housing Study (GHS) participants after they received paper or digital reports in order to compare experiences with these methods. Past evaluations have shown that effective report-back can increase environmental health literacy, increase trust in research and pride in participating in science, and motivate action to reduce environmental exposures and protect health. Results of this project will provide guidance for major NIEHS cohort studies and the California Biomonitoring Program, which is required by law to report individual results. PUBLIC HEALTH RELEVANCE: Environmental health research depends on biomonitoring and personal exposure studies that test for a wide range of chemicals for which the health effects are not yet known. Previous research shows that participants want to receive their own results, and can understand and use them; but researchers need better tools to ethically and effectively communicate unfamiliar information to diverse participants. This project will develop a personalized digital interface to report individual results using methods that respond to individual and cultural needs, preferences, and values; and it will field test the report-back tool in an epidemiologic study in public housing.