Genetic Privacy and Identity in Community Settings - GetPreCiSe

 描述（由申请人提供）：对隐私和个人身份的担忧阻碍了使用大量人群的基因组变异、表型、人口统计学和暴露数据，以揭示这些信息对健康和疾病的贡献，这些信息可以改善临床护理。人们担心这些数据，特别是基因组数据，无法得到保护。许多人担心有关他们的数据会以他们反对的方式使用（例如，拒绝他们和他们所爱的人获得工作和保险），因为现有的关于这种用途的法律的规则并不全面。此外，其他人担心基因组数据会破坏他们的自我理解，例如，通过识别错误的亲子关系或挑战有关祖先历史的信念。为了评估和解决对隐私和身份的关切，需要进行更多的研究，以确定风险-包括真实的和感觉到的风险-以及数据收集的好处，以便更有效地向公众和政策提供信息。社区背景下的遗传隐私和身份- GetPreCiSe中心的驱动假设是，迄今为止关于遗传隐私和身份的辩论是基于（a）对参与基因组学研究和翻译的行为者的影响的不完全理解和（B）可能的而不是可能的风险。因此，太多的研究集中在个人所说的话上，有效地减少了社区和社会影响在塑造对隐私的态度方面的作用。证据已经表明，一个人被重新识别或以某种方式受到伤害的可能性很低。因此，根据具体情况，目前的政策可能对人员和数据的保护过度或不足。该项目将召集具有广泛跨学科视角的学者和社区顾问，共同努力，更全面地了解这些担忧及其影响因素，模拟隐私和身份的实际风险，所有这些都将用于制定政策。GetPreCiSe由四个相互作用的具体目标指导：1。提高我们对基因组数据中隐私和身份威胁的影响的理解。对隐私和身份的关注涉及1）个人，他一直是大多数政策辩论的焦点，以及2）家庭，3）社区和4）各种社会机构，每个机构都面临着自己独特的风险和利益计算。所有这些都受到一系列影响。2.到 使用定量、分析和法律的分析来衡量1）社区，2）IRB，3）收集、持有和共享基因组和表型数据的机构，以及4）法律保护隐私和身份的有效性。3.开发模型来量化基因组数据重新识别和危害的概率，该模型考虑了一系列影响因素和保护数据的努力，以及攻击者发起攻击所需的成本以及攻击者成功攻击可能获得的潜在收益和惩罚。4.通过制定干预措施来解决关切问题，这些干预措施提供确定性并加强机构信任，以及制定政策解决方案来阻止侵犯隐私和滥用。

 DESCRIPTION (provided by applicant): Concerns about privacy and personal identity impede use of data about genomic variation, phenotypes, demographics, and exposures from large numbers of people to uncover the contributions of such information on health and disease, knowledge that can improve clinical care. People worry that these data and genomic data in particular, cannot be secured. Many fear that data about them will be used in ways they oppose (e.g., to deny them and those they love access to jobs and insurance) because existing legal rules about such uses are not comprehensive. Additionally, others worry that genomic data will undermine their self-understanding, for example, by identifying misattributed parentage or challenging beliefs about ancestral history. To evaluate and address concerns about privacy and identity, more research needs to be done to identify the risks - both real and perceived - and the benefits of data gathering in order more effectively to inform the public and policy. The driving hypothesis of the Genetic Privacy and Identity in Community Settings - GetPreCiSe Center, is that the debate about genetic privacy and identity to date has been based (a) on an incomplete understanding of the influences on the actors involved in genomics research and translation and (b) on possible, rather than probable, risks. Thus, too much of the research has focused on what individuals say, effectively minimizing the role of community and social influences in shaping attitudes toward privacy. Evidence already suggests that the likelihood that a person will be re-identified or harmed in some manner is quite low. Thus, current policies can both over- and under-protect people and data, depending on the context. This project will convene a diverse group of scholars with broadly interdisciplinary perspectives and community advisors to work together to develop a more comprehensive understanding of these worries and the factors that influence them, to model actual risks to privacy and identity, all of which will b used to inform policy. GetPreCiSe is guided by four interacting specific aims: 1. To enhance our understanding of the impact of threats to privacy and identity in genomic data. Concerns about privacy and identity involve the 1) Individual, who has been the focus of most policy debate, as well as 2) Families, 3) Communities, and 4) various Social institutions, each facing its own distinctive calculus of risk and benefit. All of these are subject to an array of influences. 2. To measure the efficacy of efforts to protect privacy and identity by 1) Communities, 2) IRBs, 3) Institutions that collect, hold, and share genomic and phenomic data, and 4) Law, using quantitative, analytic, and legal analyses. 3. To develop models to quantify the probability of genomic data re-identification and harm that take into account the set of influencing factors and efforts to protect data, as well as the costs that attacker(s) would incur to mount the attack and the potential benefits and penalties that the attacker(s) might receive with a successful attack. 4 To address concerns by developing interventions that provide certainty and enhance institutional trust, as well as policy solutions that could deter intrusions of privacy and misuse.