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: 9982627
• 负责人: ELLEN WRIGHT CLAYTON
• 金额: $ 111.24万
• 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/9982627
• 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.

社区环境中的遗传隐私和身份 (GetPreCiSe) 是 ELSI 的 NHGRI 卓越中心 研究（CEER）在其前四年建立了一个多学科研究的环境，产生了 研究遗传隐私和身份的创新方法。具体来说，中心1）解析了遗传的概念 隐私权通常被混为一谈，包括：“不受干扰的权利”、控制权和 数据治理以及对数据下游使用的担忧； 2) 记录并严格评估 直接面向消费者的基因检测（DTC-GT）公司的隐私惯例； 3）研究人们如何以及为什么 以个人隐私换取其他社会商品和服务； 4）使用新技术探索电影如何， 电视和社交媒体反映并影响公众对遗传隐私的看法； 5）精炼理解 人们将根据基因组信息被重新识别的风险。这段时间，很多事态发展 提出了遗传学隐私和身份的新问题。首先是 DTC-GT 的生长，它产生基因 用于追踪血统、获取健康信息、寻找亲戚、揭露亲子关系和追究法律责任的信息 执法调查等活动。二、数据隐私保护的法律法规 安全性，特别是基因组学方面的安全性，在美国和国外正在迅速变化。这些经常会发生冲突 随着基因组数据跨越国家和国际边界，也带来了新的挑战。三、创作 更大的队列，例如美国国立卫生研究院的“我们所有人研究计划”，引发了进一步的困境，因为某些或 参与者提供的所有基因组和其他数据将提供给从事各种工作的研究人员 的设置并受到不同的监管制度的约束。此外，这些研究的参与者可能会收到 研究结果，可以存入他们的电子健康记录中，使这些数据可以用于临床 可能不具备相关知识或基础设施的临床提供者的监管和强制行动 回应。因此，随着我们对基因组学的了解不断加深，它的多种作用和含义也随之加深 个人、家庭和社会不断发展。鉴于不断变化的形势，GetPreCiSe 在未来四年内将 解决三个互补的具体目标：1）应用多模式方法来描述社会实践如何 影响遗传隐私和身份不断演变的概念以及数据可用性的增加，并受其影响，2) 描述新兴法律和监管框架如何影响美国的基因组隐私和身份 3）设计和评估有潜力的新技术和定量框架 侵犯但也保护遗传隐私和身份。认识到遗传数据处理的机会 由于威胁在不断变化，GetPreCiSe 被设计为一个多学科中心，专注于培训下一代 一代 ELSI 研究人员，具有足够的敏捷性来应对新出现的问题。我们预期这些目标 需要在未来四年内进行完善，并可能进行调整，因此准备好播种新的 调查新出现的问题，并根据需要组建新的调查小组。