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: 10675441
• 负责人: ELLEN WRIGHT CLAYTON
• 金额: $ 103.02万
• 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/10675441
• 关键词: Advertising; Affect; Age; All of Us Research Program; American; Area; Artificial Intelligence; Behavior; Big Data; California; Caring; Clinical; 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; Marketing; Medical; Methods; Modeling; National Human Genome Research Institute; Newspapers; Participant; Perception; Persons; Policies; Privacy; Provider; Public Domains; Publications; Race; Radio; Regulation; Research; Research Personnel; Risk; Role; 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; behavior influence; behavioral economics; blockchain; cohort; community setting; computerized data processing; data access; data privacy; data sharing; design; ethical, legal, and 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），在其第一个四年，建立了多学科研究的环境，产生 研究遗传隐私和身份的创新方法。具体来说，该中心1）解析了遗传学的概念， 隐私权分为其经常合并的组成部分，包括：“不受打扰的权利”，控制和 数据治理，以及对数据下游使用的关注; 2）记录并严格评估 直接面向消费者的基因检测（DTC-GT）公司的隐私实践; 3）研究了人们如何以及为什么 用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， 电视和社交媒体反映并影响公众对遗传隐私权的看法; 5）完善理解 人们的基因组信息被重新识别的风险。在此期间，许多发展 为遗传学提出了隐私和身份的新问题。首先是DTC-GT的增长， 用于追溯祖先、获取健康信息、寻找亲属、揭示亲子关系和追求法律的信息 执法调查等活动。第二，有关数据隐私的法律法规， 安全，特别是基因组学方面的安全，在美国和国外正在迅速变化。这些经常发生冲突 随着基因组数据跨越国家和国际边界，也带来了新的挑战。第三，创造 越来越大的队列，如美国国立卫生研究院的所有我们的研究计划，提出了进一步的困境，因为一些或 参与者提供的所有基因组和其他数据将提供给从事各种研究的研究人员。 不同的环境和受不同的监管制度。此外，这些研究的参与者可能会收到 研究结果，这可以存储在他们的电子健康记录，使这些数据受到临床 监管和强制临床提供者采取行动，他们可能不具备知识或基础设施， 回答。因此，随着我们对基因组学的理解不断加深，其多种多样的作用和影响也在不断增加 个人、家庭和社会的发展。鉴于不断变化的格局，在未来四年内，GetPreciSe将 解决三个互补的具体目标：1）应用多模态方法来描述社会实践如何 影响到不断演变的遗传隐私权和身份概念以及数据可得性的增加，并受到这些概念的影响，2） 描述新兴的法律的和监管框架如何影响美国的基因组隐私和身份 3）设计和评估新技术和量化框架， 侵犯但也保护遗传隐私和身份。认识到基因数据处理的机会 和威胁不断发展，GetPreCiSe被设计成一个多学科中心，专注于培训下一个 ELSI研究人员的一代，有足够的灵活性，以应对新出现的问题。我们预期这些目标 将需要完善，并可能在未来四年内转向，因此随时准备播种新的 调查新出现的问题，并视需要组成新的调查小组。