Genetic Privacy and Identity in Community Settings - GetPreCiSe

社区环境中的遗传隐私和身份 - GetPreCiSe

• 批准号: 10256016
• 负责人: ELLEN WRIGHT CLAYTON
• 金额: $ 105.17万
• 依托单位: VANDERBILT UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-05-16 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10256016
• 关键词: Address; Advertising; Affect; Age; All of Us Research Program; American; Area; Artificial Intelligence; Arts; Behavior; Big Data; CCL4 gene; California; Caring; Clinical; Clinical Research; Communities; Conceptions; Conflict (Psychology); Data; Data Collection; Data Protection; Data Security; Deposition; Development; Electronic Health Record; Engineering; Environment; European Union; Family; Film; Gender; Genetic; Genetic Identity; Genetic Models; Genetic Privacy; Genetic study; Genomics; Growth; Health; Imagination; Individual; Infrastructure; International; Internet; Investigation; Knowledge; Law Enforcement; Laws; Legal; Link; Literature; Medical; Methods; Modeling; National Human Genome Research Institute; Newspapers; Participant; Perception; Policies; Privacy; Provider; Public Domains; Publications; Race; Radio; Regulation; Research; Research Personnel; Risk; Role; Seeds; Services; Social Network; Social Sciences; Societies; Technology; Television; Testing; Time; Training; United States; United States National Institutes of Health; Use of New Techniques; Visual; Work; base; behavior influence; behavioral economics; blockchain; cohort; community setting; computerized data processing; data access; data privacy; data sharing; design; ethical legal social implication; genetic information; genetic testing; genomic data; innovation; insight; interest; legal implication; minimal risk; multidisciplinary; multimodality; new technology; news; next generation; sex; social; social media

Genetic Privacy and Identity in Community Settings (GetPreCiSe), is an NHGRI Center of Excellence in ELSI Research (CEER) that, in its first four years, established an environment for multi-disciplinary study that produced innovative ways of studying genetic privacy and identity. Specifically, the center 1) parsed the concept of genetic privacy into its often conflated constituent components, including: the “right to be let alone,” control and governance of data, and concerns about downstream uses of data; 2) documented and critically assessed the privacy practices of direct to consumer genetic testing (DTC-GT) companies; 3) examined how and why people trade off personal privacy for other social goods and services; 4) used new techniques to explore how film, television, and social media reflect and affect public perceptions of genetic privacy; and 5) refined understanding of the risk that people will be re-identified from their genomic information. During this time, many developments raised new issues of privacy and identity for genetics. First is the growth of DTC-GT, which generates genetic information used to trace ancestry, acquire health information, find relatives, uncover parentage, and pursue law enforcement investigations, among other activities. Second, laws and regulations governing data privacy and security, particularly with respect to genomics, are changing rapidly in the U.S. and abroad. These often conflict and present new challenges as genomic data move across state and international borders. Third, the creation of ever larger cohorts, such as the NIH’s All of Us Research Program, raises further dilemmas because some or all of the genomic and other data participants provide will be made available to investigators working in a variety of settings and subject to different regulatory regimes. Moreover, participants in these studies may receive research results, which could be deposited in their electronic health records, making this data subject to clinical regulation and compelling action by clinical providers who may not have the knowledge or infrastructure to respond. Thus, as our understanding of genomics increases, so, too, do its multifarious roles and implications for individuals, families, and society evolve. Given the evolving landscape, in its next four years GetPreCiSe will address three complementary specific aims: 1) Apply multimodal methods to characterize how social practices affect, and are affected by, evolving notions of genetic privacy and identity and increased availability of data, 2) Characterize how emerging legal and regulatory frameworks influence genomic privacy and identity in the US and abroad, and 3) Engineer and evaluate new technologies and quantitative frameworks that have potential to intrude on, but also protect, genetic privacy and identity. Recognizing that genetic data processing opportunities and threats are evolving, GetPreCiSe is designed to be a multi-disciplinary center, focused on training the next generation of ELSI researchers, with sufficient agility to respond to emerging issues. We anticipate these aims will need to be refined, and possibly pivoted, over the next four years and so stand ready to seed new investigations into emerging issues and compose new teams for investigation as needed.

遗传隐私和社区环境中的身份（GetPrecise）是NHGRI ELSI卓越中心 研究（CEER）在头四年中，建立了一个多学科研究的环境 研究遗传隐私和身份的创新方式。具体而言，中心1）解析遗传的概念 将其经常混合到其中的隐私构成组成部分，包括：“更不用说的权利”，控制和 数据治理以及对数据下游使用的担忧； 2）记录并批判性评估 直接对消费者基因测试（DTC-GT）公司的隐私惯例； 3）检查了人们的方式和原因 为其他社会商品和服务进行个人隐私权衡； 4）使用新技术来探索电影的方式 电视和社交媒体反映和影响公众对遗传隐私的看法； 5）精致的理解 人们从基因组信息中重新确定人们的风险。在此期间，许多发展 提出了遗传学的隐私和身份的新问题。首先是DTC-GT的生长，它产生遗传 用于追踪祖先，获取健康信息，查找亲戚，发现父母的信息，并追求法律 执法调查以及其他活动。第二，管理数据隐私和法规 在美国和国外，安全，尤其是在基因组学方面的安全性正在迅速变化。这些经常冲突 并提出新的挑战，因为基因组数据跨州和国际边界转移。第三，创作 诸如美国国立卫生研究院（NIH 所有的基因组和其他数据参与者提供的所有基因组和其他数据都将为各种工作的研究人员提供 设置并受到不同监管制度的影响。而且，这些研究的参与者可能会接受 研究结果，可以存放在其电子健康记录中，使该数据受临床的约束 可能没有知识或基础设施的临床提供者的监管和引人注目的行动 回应。随着我们对基因组学的理解的增加，也扮演了多种作用和含义 对于个人，家庭和社会的进化。鉴于进化格局，在接下来的四年中， 地址三个完整的特定目的：1）应用多模式方法来表征社会实践的方式 情感，并受到遗传隐私和身份的不断发展的通知以及数据的可用性，2） 表征新兴的法律和监管框架如何影响美国的基因组隐私和身份 在国外，以及3）工程师和评估具有潜力的新技术和定量框架 侵入，但也保护遗传隐私和身份。认识到遗传数据处理机会 威胁正在不断发展，GetPrecise旨在成为一个多学科中心，重点是培训下一个中心 ELSI研究人员的产生，具有足够的敏捷性来应对新兴问题。我们预计这些目标 在接下来的四年中，将需要完善，可能是枢纽的，因此可以准备好播种 调查新兴问题，并根据需要组成新的投资团队。