Privacy in the Genomic Era

Genome sequencing technology has advanced at a rapid pace and it is now possible to generate highly-detailed genotypes inexpensively. The collection and analysis of such data has the potential to support various applications, including personalized medical services. While the benefits of the genomics revolution are trumpeted by the biomedical community, the increased availability of such data has major implications for personal privacy; notably because the genome has certain essential features, which include (but are not limited to) (i) an association with traits and certain diseases, (ii) identification capability (e.g., forensics), and (iii) revelation of family relationships. Moreover, direct-to-consumer DNA testing increases the likelihood that genome data will be made available in less regulated environments, such as the Internet and for-profit companies. The problem of genome data privacy thus resides at the crossroads of computer science, medicine, and public policy. While the computer scientists have addressed data privacy for various data types, there has been less attention dedicated to genomic data. Thus, the goal of this paper is to provide a systematization of knowledge for the computer science community. In doing so, we address some of the (sometimes erroneous) beliefs of this field and we report on a survey we conducted about genome data privacy with biomedical specialists. Then, after characterizing the genome privacy problem, we review the state-of-the-art regarding privacy attacks on genomic data and strategies for mitigating such attacks, as well as contextualizing these attacks from the perspective of medicine and public policy. This paper concludes with an enumeration of the challenges for genome data privacy and presents a framework to systematize the analysis of threats and the design of countermeasures as the field moves forward

A One Health Evaluation of the Southern African Centre for Infectious Disease Surveillance

Rooted in the recognition that emerging infectious diseases occur at the interface of human, animal, and ecosystem health, the Southern African Centre for Infectious Disease Surveillance (SACIDS) initiative aims to promote a trans-sectoral approach to address better infectious disease risk management in five countries of the Southern African Development Community. Nine years after SACIDS’ inception, this study aimed to evaluate the program by applying a One Health (OH) evaluation framework developed by the Network for Evaluation of One Health (NEOH). The evaluation included a description of the context and the initiative, illustration of the theory of change, identification of outputs and outcomes, and assessment of the One Healthness. The latter is the sum of characteristics that defines an integrated approach and includes OH thinking, OH planning, OH working, sharing infrastructure, learning infrastructure, and systemic organization. The protocols made available by NEOH were used to develop data collection protocols and identify the study design. The framework relies on a mixed methods approach by combining a descriptive and qualitative assessment with a semi-quantitative evaluation (scoring). Data for the analysis were gathered during a document review, in group and individual interviews and in an online survey. Operational aspects (i.e., OH thinking, planning, and working) were found to be balanced overall with the highest score in the planning dimension, whereas the infrastructure (learning infrastructure, systemic organization, and sharing infrastructure) was high for the first two dimensions, but low for sharing. The OH index calculated was 0.359, and the OH ratio calculated was 1.495. The program was praised for its great innovative energy in a difficult landscape dominated by poor infrastructure and its ability to create awareness for OH and enthuse people for the concept; training of people and networking. Shortcomings were identified regarding the balance of contributions, funds and activities across member countries in the South, lack of data sharing, unequal allocation of resources, top-down management structures, and limited horizontal collaboration. Despite these challenges, SACIDS is perceived to be an effective agent in tackling infectious diseases in an integrated manner

Competency Implications of Changing Human Resource Roles

[Excerpt] The present study examines which competencies will be necessary to perform key human resource roles over the next decade at Eastman Kodak Company. This project was a critical component of an ongoing quality process to improve organizational capability. The results establish a platform that will enable Kodak to better assess, plan, develop, and measure the capability of human resource staff

Perspectives on the Political Legitimacy and Future of the European Union

The confidence that Informed Citizenry and their Economic Elites have in the European Union were assessed. Survey data, from the 2009 Eurobarometer 72.4 with a sample size of 8,499 citizens, from 27 European nations, were supplemented with interviews with two professionals knowledgeable about EU politics and content analyses of current events, such as the EU debt crisis, the rise in terrorist attacks, the British Referendum, and the immigration crisis. Although both citizens and elites were confident about the EU’s future, voices of informed citizenry shaped the confidence in the EU more than economic elites. These findings substantiated the Systemic Coupling theoretical model more than the Power Elite model and contributed to the empirical literature on citizens’ trust in the EU and transnational political systems. Additional cross-temporal examination of citizens’ confidence in the EU and the roles of new media are warranted

National Mesothelioma Virtual Bank: A standard based biospecimen and clinical data resource to enhance translational research

Background: Advances in translational research have led to the need for well characterized biospecimens for research. The National Mesothelioma Virtual Bank is an initiative which collects annotated datasets relevant to human mesothelioma to develop an enterprising biospecimen resource to fulfill researchers' need. Methods: The National Mesothelioma Virtual Bank architecture is based on three major components: (a) common data elements (based on College of American Pathologists protocol and National North American Association of Central Cancer Registries standards), (b) clinical and epidemiologic data annotation, and (c) data query tools. These tools work interoperably to standardize the entire process of annotation. The National Mesothelioma Virtual Bank tool is based upon the caTISSUE Clinical Annotation Engine, developed by the University of Pittsburgh in cooperation with the Cancer Biomedical Informatics Grid™ (caBIG™, see http://cabig.nci.nih.gov). This application provides a web-based system for annotating, importing and searching mesothelioma cases. The underlying information model is constructed utilizing Unified Modeling Language class diagrams, hierarchical relationships and Enterprise Architect software. Result: The database provides researchers real-time access to richly annotated specimens and integral information related to mesothelioma. The data disclosed is tightly regulated depending upon users' authorization and depending on the participating institute that is amenable to the local Institutional Review Board and regulation committee reviews. Conclusion: The National Mesothelioma Virtual Bank currently has over 600 annotated cases available for researchers that include paraffin embedded tissues, tissue microarrays, serum and genomic DNA. The National Mesothelioma Virtual Bank is a virtual biospecimen registry with robust translational biomedical informatics support to facilitate basic science, clinical, and translational research. Furthermore, it protects patient privacy by disclosing only de-identified datasets to assure that biospecimens can be made accessible to researchers. © 2008 Amin et al; licensee BioMed Central Ltd

Strategic Human Capital Management: NRC Could Better Manage the Size and Composition of Its Workforce by Further Incorporating Leading Practices

[Excerpt] After the passage of the Energy Policy Act of 2005, which included tax incentives for nuclear energy, NRC significantly expanded its workforce to meet the demands of an anticipated increase in workload that ultimately did not occur. More recently, a forecast for reduced growth in the nuclear industry prompted NRC to develop plans for changing its structure and workforce to better respond to changes in the nuclear industry. Strategic human capital planning is one of several actions the agency is taking. The explanatory statement accompanying the Consolidated Appropriations Act for fiscal year 2016 included a provision for GAO to report on NRC’s workforce management. GAO examined NRC’s strategic human capital management efforts and the extent to which these efforts incorporate leading practices. GAO reviewed NRC’s strategic workforce plan and other related documents and interviewed knowledgeable NRC officials

Knowledge, Attitudes and Practices (KAP) about rabies prevention and control: a community survey in Tanzania

BACKGROUND: Despite being entirely preventable,canine rabies still kills 55,000 people/year in developing countries. Information about local beliefs and practices can identify knowledge gaps that may affect prevention practices and lead to unnecessary deaths. METHODOLOGY/PRINCIPAL FINDINGS: We investigated knowledge, attitudes and practices related to rabies and its prevention and control amongst a cross-section of households (n = 5,141)in urban and rural areas of central, southern and northern Tanzania. Over 17% of respondents owned domestic dogs (average of 2.3 dogs/household), >95% had heard about rabies, and >80% knew that rabies is transmitted through dog bites. People who (1)had greater education,(2)originated from areas with a history of rabies interventions,(3)had experienced exposure by a suspect rabid animal,(4)were male and(5)owned dogs were more likely to have greater knowledge about the disease. Around 80% of respondents would seek hospital treatment after a suspect bite, but only 5% were aware of the need for prompt wound cleansing after a bite. Although >65% of respondents knew of dog vaccination as a means to control rabies, only 51% vaccinated their dogs. Determinants of dog vaccination included(1)being a male-headed household,(2)presence of children,(3)low economic status,(4)residing in urban areas,(5)owning livestock,(6)originating from areas with rabies interventions and(7)having purchased a dog. The majority of dog-owning respondents were willing to contribute no more than US$0.31 towards veterinary services. CONCLUSIONS/SIGNIFICANCE: We identified important knowledge gaps related to, and factors influencing the prevention and control of rabies in Tanzania. Increasing knowledge regarding wound washing, seeking post-exposure prophylaxis and the need to vaccinate dogs are likely to result in more effective prevention of rabies; however, greater engagement of the veterinary and medical sectors is also needed to ensure the availability of preventative services