WORKSHOP: Open Data/Private Persons: Forging a New Social Contract for Biomedicine in an Age of Genomics and Big Data

今天，基因组学和“大数据”健康研究方法有望更好地了解从癌症到阿尔茨海默氏症等多种疾病的病理和治疗方法。然而，挖掘基因组和其他数字健康数据需要收集和处理大量生物医学数据的实践，这些数据挑战了长期以来对隐私、对自己身体的所有权和控制权的承诺。这种分享与隐私和自主精神的冲突引发了一场关于谁拥有身体组织，以及应该如何收集和分享与健康相关的数据以造福于公共利益的公开辩论。为了将这些日益增长的关切上升到国家政策的层面，我们将在加州大学圣克鲁斯分校召开为期两天的议程设置研讨会。研讨会将汇集基因组研究、女性S健康、信息学、医疗保健、民权、土著权利、科学政策和医学社会学的国际领导者。研讨会的目标将是创新方法，以驾驭隐私权和同意权与共享生物医学数据的愿望之间的紧张关系。研讨会的重点将是如何建立大数据研究基础设施，使不同的人群受益，特别是美洲原住民和土著人民，尊重拥有和解释身体组织和基因组数据的不同方法。因此，该项目开发了解决科学和司法问题的新的政策方法，利用和加强了南加州大学科学和司法研究中心(SJRC)的基础设施。这项研究的结果将通过在生物医学期刊和大众媒体上发表结果而被翻译到更广泛的背景下。研讨会和出版物的视频将在SJRC的网站上提供。

Genomics and 'big data' approaches to health today promise a better understanding of the pathology and treatment of a wide range of diseases, from cancer to Alzheimer's. However, mining genomic and other digital health data require practices for collecting and processing large amounts of biomedical data that challenge longstanding commitments to privacy and ownership and control of one's own body. This clash of ethos of sharing with those of privacy and autonomy has sparked a public debate about who owns bodily tissues and how health-related data should be collected and shared for the public good. To bring these growing concerns to the level of national policy, we will convene a two-day long agenda-setting workshop at UC Santa Cruz. The workshop will bring together international leaders in genomics research, women?s health, informatics, healthcare, civil rights, indigenous rights, science policy and the sociology of medicine. The goal will be to innovate novel approaches to navigating the tensions between rights of privacy and consent and desires to share biomedical data.The focus of the workshop will be on how big data research infrastructures might be built that benefit diverse populations, especially Native Americans and indigenous peoples, respecting different approaches to owning and interpreting bodily tissues and genomic data. This project thus develops novel policy approaches to questions of science and justice, utilizing and enhancing the infrastructure of the UCSC Science and Justice Research Center (SJRC). The results of the research will be translated to broader contexts through publishing results in biomedical journals and the popular press. Videos of workshops and publications will be made available on the SJRC website.