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关于基因组变异、表型、人口统计学和大量人群暴露的数据的使用，以揭示这些关于健康和疾病的信息的贡献，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，不能得到保护。许多人担心关于他们的数据会被他们反对的方式使用(例如，剥夺他们和他们喜欢的人获得工作和保险的机会)，因为现有的关于这种用途的法律规定并不全面。此外，其他人担心基因组数据会破坏他们的自我理解，例如，通过识别错误的父母身份或挑战关于祖先历史的信念。为了评估和解决对隐私和身份的担忧，需要进行更多的研究，以确定数据收集的真实和感知风险以及好处，以便更有效地向公众和政策提供信息。社区环境中的遗传隐私和身份-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)对参与基因组研究和翻译的行为者的影响的不完全理解，以及(B)可能的、而不是可能的风险。因此，太多的研究集中在个人的言论上，有效地将社区和社会影响在塑造对隐私的态度方面的作用降至最低。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相当低。因此，当前的政策可能会对人员和数据保护过度或不足，具体取决于具体情况。该项目将召集一群具有广泛跨学科视角的学者和社区顾问共同努力，以更全面地了解这些担忧及其影响因素，建立隐私和身份的实际风险模型，所有这些都将用于制定政策。GetPreCiSe以四个相互作用的具体目标为指导：1.加强我们对基因组数据中隐私和身份威胁的影响的了解。对隐私和身份的担忧涉及1)个人，他们一直是大多数政策辩论的焦点，2)家庭，3)社区，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.至 通过1)社区，2)IRBs，3)收集、持有和共享基因组和表现学数据的机构，以及4)法律，使用定量、分析和法律分析来衡量保护隐私和身份的努力的有效性。3.开发模型以量化基因组数据重新识别的概率和损害，其中考虑到一组影响因素和保护数据的努力，以及攻击者(S)发动攻击将招致的成本，以及攻击者(S)成功攻击可能获得的潜在好处和惩罚。4通过制定提供确定性和加强机构信任的干预措施以及能够阻止侵犯隐私和滥用的政策解决办法来解决关切问题。

 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.