Genetic Privacy and Identity in Community Settings - GetPreCiSe

社区环境中的遗传隐私和身份认同(GetPreCiSe)是NHGRI在ELSI中的卓越中心 研究(CEER)，在最初的四年里，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。具体地说，该中心1)解析了遗传的概念 隐私权通常被混为一谈的组成部分，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)记录和严格评估 直接针对消费者的基因检测(DTC-GT)公司的隐私实践；3)调查了人们如何以及为什么 用个人隐私换取其他社会产品和服务；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的看法；以及5)完善理解 人们将根据他们的基因组信息被重新识别的风险。在这段时间里，许多事态发展 为遗传学提出了隐私和身份的新问题。首先是DTC-GT的增长，它产生了基因 用于追溯祖先、获取健康信息、寻找亲属、发现亲缘关系和追查法律的信息 执法调查，以及其他活动。第二，规范数据隐私和数据保护的法律法规 在美国和国外，安全，特别是在基因组学方面，正在迅速发生变化。这些经常发生冲突 随着基因组数据跨越国家和国际边界的转移，也带来了新的挑战。第三，创造 越来越大的队列，例如NIH的我们所有人研究计划，提出了进一步的两难境地，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工作的调查人员 不同的环境和不同的监管制度。此外，这些研究的参与者可能会收到 研究结果，可以存储在他们的电子健康记录中，使这些数据受制于临床 可能不具备以下知识或基础设施的临床提供商的监管和强制性行动 请回答。因此，随着我们对基因组学理解的增加，它的各种作用和含义也在增加 对于个人来说，家庭和社会都在进化。鉴于不断变化的格局，GetPreCiSe将在未来四年内 解决三个相辅相成的具体目标：1)应用多模式方法来表征社会实践 影响并受到遗传隐私和身份概念的演变以及数据可用性的提高，2) 描述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 以及3)设计和评估新技术和量化框架，这些技术和量化框架有可能 侵犯，但也保护，基因隐私和身份。认识到遗传数据处理机会 GetPreCiSe旨在成为一个多学科中心，专注于培训下一个 一代ELSI研究人员，具有足够的敏捷性来应对新出现的问题。我们期待着这些目标 在接下来的四年里需要改进，可能还需要调整，因此准备好播种新的 对新出现的问题进行调查，并根据需要组建新的调查小组。

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.