Morello-Frosch Rachel, Varshavsky Julia, Liboiron Max, Brown Phil, Brody Julia G
University of California Berkeley, School of Public Health and Department of Environmental Science, Policy and Management, 130 Mulford Hall, Berkeley, CA 94720-3114, USA.
University of California Berkeley, School of Public Health, 50 University Hall, #7360, Berkeley, CA 94720-7360, USA.
Environ Res. 2015 Jan;136:363-72. doi: 10.1016/j.envres.2014.10.001. Epub 2014 Nov 25.
Biomonitoring is a critical tool to assess the effects of chemicals on health, as scientists seek to better characterize life-course exposures from diverse environments. This trend, coupled with increased institutional support for community-engaged environmental health research, challenge established ethical norms related to biomonitoring results communication and data sharing between scientists, study participants, and their wider communities.
Through a literature review, participant observation at workshops, and interviews, we examine ethical tensions related to reporting individual data from chemical biomonitoring studies by drawing relevant lessons from the genetics and neuroimaging fields.
In all three fields ethical debates about whether/how to report-back results to study participants are precipitated by two trends. First, changes in analytical methods have made more data accessible to stakeholders. For biomonitoring, improved techniques enable detection of more chemicals at lower levels, and diverse groups of scientists and health advocates now conduct exposure studies. Similarly, innovations in genetics have catalyzed large-scale projects and broadened the scope of who has access to genetic information. Second, increasing public interest in personal medical information has compelled imaging researchers to address demands by participants to know their personal data, despite uncertainties about their clinical significance. Four ethical arenas relevant to biomonitoring results communication emerged from our review: tensions between participants' right-to-know their personal results versus their ability or right-to-act to protect their health; whether and how to report incidental findings; informed consent in biobanking; and open-access data sharing.
Ethically engaging participants in biomonitoring studies requires consideration of several issues, including scientific uncertainty about health implications and exposure sources, the ability of participants to follow up on potentially problematic results, tensions between individual and community research protections, governance and consent regarding secondary use of tissue samples, and privacy challenges in open access data sharing.
生物监测是评估化学物质对健康影响的关键工具，因为科学家们试图更好地描述来自不同环境的终生暴露情况。这一趋势，再加上机构对社区参与的环境卫生研究的支持增加，对与生物监测结果沟通以及科学家、研究参与者及其更广泛社区之间的数据共享相关的既定伦理规范构成了挑战。
通过文献综述、在研讨会上的参与观察以及访谈，我们借鉴遗传学和神经影像学领域的相关经验教训，审视与报告化学生物监测研究中的个体数据相关的伦理困境。
在所有这三个领域中，关于是否/如何向研究参与者反馈结果的伦理辩论是由两种趋势引发的。首先，分析方法的变化使利益相关者能够获取更多数据。对于生物监测而言，改进的技术能够在更低水平检测到更多化学物质，并且不同的科学家群体和健康倡导者现在都在进行暴露研究。同样，遗传学方面的创新推动了大规模项目，并扩大了能够获取遗传信息的人群范围。其次，公众对个人医疗信息的兴趣日益浓厚，这迫使影像学研究人员回应参与者了解其个人数据的要求，尽管这些数据的临床意义存在不确定性。我们通过综述得出了与生物监测结果沟通相关的四个伦理领域：参与者了解其个人结果的权利与其采取行动保护自身健康的能力或权利之间的紧张关系；是否以及如何报告偶然发现；生物样本库中的知情同意；以及开放获取数据共享。
在生物监测研究中让参与者在伦理上参与进来需要考虑几个问题，包括对健康影响和暴露源的科学不确定性、参与者跟进潜在问题结果的能力、个体和社区研究保护之间的紧张关系关于组织样本二次使用的治理和同意，以及开放获取数据共享中的隐私挑战。
