A Sociotechnical Approach to Improving Security and Privacy in the Genomic Data Ecosystem

提高基因组数据生态系统安全性和隐私性的社会技术方法

• 批准号: 10355639
• 负责人: Carl A Gunter
• 金额: $ 18.72万
• 依托单位: UNIVERSITY OF ILLINOIS AT URBANA-CHAMPAIGN
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-01-15 至 2024-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10355639
• 关键词: Adopted; Adoption; Algorithms; Attitude; Belief; Cellular Phone; Computers; Data; Data Set; Data Store; Databases; Distant; Dreams; Ecosystem; Elements; Enhancement Technology; Ensure; Face; Failure; Genetic; Genome; Genomics; Goals; Hand; Home; Individual; Infrastructure; Intention; Knowledge; Lead; Legal; Masks; Methodology; Methods; Mission; Modeling; Motivation; National Human Genome Research Institute; Participant; Policies; Principles of law and justice; Privacy; Privatization; Process; Protocols documentation; Public Health; Research; Research Methodology; Research Personnel; Rights; Risk; Security; Services; Source; System; Technology; Testing; Time; United States National Institutes of Health; Work; base; data access; data ecosystem; data integrity; data sharing; design; digital; ethnic diversity; genetic testing; genome integrity; genome sciences; genomic data; improved; in silico; innovation; new technology; next generation; novel; open data; precision medicine; prevent; prototype; racial diversity; recruit; social; trend; usability; volunteer

PROJECT SUMMARY/ABSTRACT The dream of open science for genomics is hindered by concerns about genomic data re-identification and the resulting restrictive data access protocols. The long-term goal is to create a technical ecosystem that can facilitate more open scientific practices for genomic research. The central motivation is the belief that both equity and the pace of advancement of genomic science could be increased by easing access to existing genomic data, including underutilized direct-to-consumer genomic data, through a combination of two technologies: bringing genomic analysis to participant-stored data and the adoption of sign and mask technology. The rationale for this project is that these technologies greatly facilitate the recruitment of research participants by creating a bridge between researchers and potential participants who already possess their own genomic data, signing that genomic data to re-assure researchers about its provenance and integrity, and masking those portions of the data that are not required for the analysis at hand from researchers to ensure participant privacy. The central motivation will be pursued through four specific aims: 1) Develop and evaluate a framework based on bringing genomic analysis to the data; 2) Design and analyze an offline digital signature system for masked genomic data; 3) Characterize key aspects of the legal and regulatory context for the genomic data ecosystem; 4) Analyze the likely acceptance by researchers and usability by participants of new technologies for protecting and sharing genomic data. The first aim will develop the technologies necessary for carrying out “in-silico” genome tests on the desktop computers or smartphones of individuals. The second aim will develop the technologies necessary for individuals to protect sensitive parts of their genomic data while still providing useful integrity assurances to researchers. The third aim will identify and characterize the significant legal and regulatory challenges that face an open science approach to genomic research. The fourth aim will use qualitative and quantitative methods to assess the acceptance, impact, and usability of the technologies developed in studies targeting genomics researchers and lay users. The research proposed in this application is innovative because it combines technical, legal, and social scientific methodologies to create a framework for open science in genomics, to characterize the legal and policy challenges that must be overcome for this framework’s widespread adoption, and to empirically assess how these technologies can be made most useful for researchers while simultaneously protecting the rights of research participants. The proposed research is significant because it will facilitate more rapid advancement for genomic science by providing access to underutilized and more diverse sources of genomic data, streamline the process of gaining access to potential sources of genomic data while ensuring its integrity, and provide a new framework within which the security and privacy of genomic data can be increased for research participants. Ultimately, such knowledge has the potential to contribute to the adoption of open science practices in genomic research.

项目概要/摘要 基因组学开放科学的梦想因对基因组数据重新识别和 由此产生的限制性数据访问协议的长期目标是创建一个可以的技术生态系统。 促进基因组研究更加开放的科学实践的核心动机是相信两者是平等的。 通过简化对现有基因组的获取，可以加快基因组科学的进步步伐 通过两种技术的结合，包括未充分利用的直接面向消费者的基因组数据： 将基因组分析引入参与者存储的数据并采用标志和掩模技术。 对于这个项目来说，这些技术通过创建一个 研究人员和已经拥有自己的基因组数据的潜在参与者之间的桥梁，签署 基因组数据，以向研究人员保证其来源和完整性，并掩盖这些部分 研究人员手头分析不需要的数据，以确保参与者的隐私。 将通过四个具体目标来追求激励： 1) 开发和评估一个基于带来的框架 数据的基因组分析；2）设计和分析掩蔽基因组的离线数字签名系统 数据；3) 描述基因组数据生态系统的法律和监管环境的关键方面； 研究人员可能接受的可能性以及新技术用于保护和共享的可用性 第一个目标是开发对基因组数据进行“计算机模拟”测试所需的技术。 第二个目标是开发个人的台式电脑或智能手机。 让个人保护其基因组数据的敏感部分，同时仍然提供有用的完整性保证 研究人员的第三个目标是确定并描述所面临的重大法律和监管挑战。 第四个目标是使用定性和定量方法进行基因组研究。 评估针对基因组学的研究中开发的技术的接受度、影响和可用性 该应用程序中提出的研究具有创新性，因为它结合了技术、 法律和社会科学方法，为基因组学的开放科学创建一个框架，以表征 为了广泛采用该框架必须克服的法律和政策挑战，以及 凭经验评估如何使这些技术对研究人员最有用，同时 保护研究参与者的权利很重要，因为它将促进更多的研究。 通过提供未充分利用和更多样化的来源，基因组科学迅速发展 基因组数据，简化获取基因组数据潜在来源的过程，同时确保其 完整性，并提供一个可以提高基因组数据的安全性和隐私性的新框架 最终，这些知识有可能有助于开放的采用。 基因组研究的科学实践。