To date, many important threads of information privacy research have developed, but these threads have not been woven together into a cohesive fabric. This paper provides an interdisciplinary review of privacy-related research in order to enable a more cohesive treatment. With a sample of 320 privacy articles and 128 books and book sections, we classify previous literature in two ways: (1) using an ethics-based nomenclature of normative, purely descriptive, and empirically descriptive, and (2) based on their level of analysis: individual, group, organizational, and societal.

Based upon our analyses via these two classification approaches, we identify three major areas in which previous research contributions reside: the conceptualization of information privacy, the relationship between information privacy and other constructs, and the contextual nature of these relationships.

As we consider these major areas, we draw three overarching conclusions. First, there are many theoretical developments in the body of normative and purely descriptive studies that have not been addressed in empirical research on privacy. Rigorous studies that either trace processes associated with, or test implied assertions from, these value-laden arguments could add great value. Second, some of the levels of analysis have received less attention in certain contexts than have others in the research to date. Future empirical studies-both positivist and interpretive--could profitably be targeted to these under-researched levels of analysis. Third, positivist empirical studies will add the greatest value if they focus on antecedents to privacy concerns and on actual outcomes. In that light, we recommend that researchers be alert to an overarching macro model that we term APCO (Antecedents → Privacy Concerns → Outcomes).

/pdf/information-privacy-research-an-interdisciplinary-review-3ozmykcimw.pdf

Information privacy research: an interdisciplinary review

The study examines differences in individualâ€™s privacy concerns and beliefs about government surveillance in Italy and the United States. By incorporating aspects of multiple cultural theories, we argue that for both countries, the userâ€™s decision to conduct e-commerce transactions on the Internet is influenced by privacy concerns, perceived need for government surveillance that would secure the Internet environment from fraud, crime and terrorism, and balancing concerns about government intrusion. An empirical model was tested using LISREL structural equation modeling and multigroup analysis. The results support the hypotheses with regard to direction and relative magnitude of the relationships. Italians exhibit lower Internet privacy concerns than individuals in the U.S., lower perceived need for government surveillance, and higher concerns about government intrusion. The relationships among the model constructs are also different across the two countries. Implications of the findings and directions for future work are discussed.

Internet Users' Privacy Concerns and Beliefs About Government Surveillance: An Exploratory Study of Differences Between Italy and the United States

The Penn Medicine BioBank (PMBB) is an electronic health record (EHR)-linked biobank at the University of Pennsylvania (Penn Medicine). A large variety of health-related information, ranging from diagnosis codes to laboratory measurements, imaging data and lifestyle information, is integrated with genomic and biomarker data in the PMBB to facilitate discoveries and translational science. To date, 174,712 participants have been enrolled into the PMBB, including approximately 30% of participants of non-European ancestry, making it one of the most diverse medical biobanks. There is a median of seven years of longitudinal data in the EHR available on participants, who also consent to permission to recontact. Herein, we describe the operations and infrastructure of the PMBB, summarize the phenotypic architecture of the enrolled participants, and use body mass index (BMI) as a proof-of-concept quantitative phenotype for PheWAS, LabWAS, and GWAS. The major representation of African-American participants in the PMBB addresses the essential need to expand the diversity in genetic and translational research. There is a critical need for a “medical biobank consortium” to facilitate replication, increase power for rare phenotypes and variants, and promote harmonized collaboration to optimize the potential for biological discovery and precision medicine.

/pdf/the-penn-medicine-biobank-towards-a-genomics-enabled-vn4se60v.pdf

The Penn Medicine BioBank: Towards a Genomics-Enabled Learning Healthcare System to Accelerate Precision Medicine in a Diverse Population

Globalization blurs the traditional distinction between high and low politics, creating connections between previously discrete issue areas. An important existing literature focuses on how states may intentionally tie policy areas together to enhance cooperation. Building on recent scholarship in historical institutionalism, the authors emphasize how the extent of political discretion enjoyed by heads of state to negotiate and implement international agreements varies across issue areas. When policy domains are linked, so too are different domestic political configurations, each with its own opportunity structures or points of leverage. Opening up the possibility for such variation, the article demonstrates how actors other than states, such as nonstate and substate actors, use the heterogeneity of opportunity structures to influence negotiations and their institutional consequences. The authors examine the theory's purchase on international cooperation over intelligence, privacy, and data exchange in the transatlantic space in the wake of the terrorist attacks of September 11, 2001, and the revelations made public by Edward Snowden in 2013. The findings speak to critical international relations debates, including the role of nonstate actors in diplomacy, the interaction between domestic and international politics, and the consequences of globalization and digital technologies for the relationship between international political economy and security.

https://www.cambridge.org/core/services/aop-cambridge-core/content/view/6CBF7194339A846B585FF697F8827DD9/S0043887118000114a.pdf/div-class-title-linkage-politics-and-complex-governance-in-transatlantic-surveillance-div.pdf

Linkage Politics and Complex Governance in Transatlantic Surveillance

Service industries, such as health care and banking, process large amounts of sensitive customer data in their daily transactions. The information obtained from this data frequently supports the competitive strategies of organizations while concurrently causing uncertainty and concern from the customer. Furthermore and given the service orientation of these data, poor data quality can result in extensive social and economic impacts. As a result, data practices and the employees who process the data must be managed in a cautious and thorough manner to thwart any privacy violations. This article explores employees' privacy orientation in their respective sector, health care or banking, through a parsimonious 15-item instrument. Our results indicate that health care professionals are largely concerned about errors in patient information whereas banking professionals are concerned about improper access of customer information—thereby suggesting differences in perceived privacy practices among these 2 service ...

Information Privacy in the Service Sector: An Exploratory Study of Health Care and Banking Professionals

This article examines the interaction between data privacy, which was a highly salient political issue before the events of September 11, and cyber-security and homeland security, which became much more salient after those events. The article illustrates the shift in salience by examining the USA-PATRIOT Act, which was passed quickly in the fall of 2001 despite containing a number of surveillance provisions that had been explicitly rejected by Congress in 2000. To understand the interaction between privacy and security, the article examines the medical privacy rule issued in 2000 under the Health Insurance Portability and Accountability Act (HIPAA). (In the interests of full disclosure, the authors were the lead White House officials in coordinating the privacy rule.) The analysis here shows that the HIPAA rule stands up well to the concerns of the post-September 11 era. Concerns about public safety are met by existing provisions that permit disclosures to protect national security, to react to emergency circumstances, and to respond to law enforcement inquiries. The article explores in particular detail the proposed Model State Emergency Health Powers Act, drafted in the wake of the 2001 anthrax attacks. Professors Lawrence Gostin and James Hodge have argued that this Act is justified by a new "model of information sharing" for medical information. Our article concludes that public health concerns are appropriately addressed by the current HIPAA rule, and that a "model of information sharing" sends precisely the wrong signal about how the health system will handle issues of data privacy and security. More generally, the article analyzes situations of "security vs. privacy", where the two values are antagonistic, and situations of "security and privacy", where the two values work together. Security in some instances means greater surveillance, information gathering, and information sharing. For instance, law enforcement can monitor the online movements of hackers or hospitals can more quickly report cases of anthrax infection. These situations of "security vs. privacy" are defined as instances where security is promoted by getting information to the proper decisionmakers. As these information flows increase, privacy decreases. By contrast, security measures often promote privacy. Good security is one of the standard privacy fair information practices, because otherwise any hacker can get into a sensitive database. Good security, moreover, creates audit trails about which authorized users have accessed particular systems or data. Such auditing mechanisms promote the fair information practice of accountability, by deterring wrongdoing and making enforcement more effective. Finally, the authors explain how the most cost-effective and thorough implementation of privacy occurs at the time of a computer system overhaul. This approach is fundamental to HIPAA, which provided that privacy and security protections should be built at the same time as the shift to electronic health records. The new emphasis on security after September 11, in short, is a major strategic opportunity to improve data handling practices in general, for both security and privacy.

https://papers.ssrn.com/sol3/Delivery.cfm/SSRN_ID347322_code021211500.pdf?abstractid=347322&mirid=1

Security and Privacy After September 11: The Health Care Example

Security and privacy after September 11: the health care example.

Impact of integrating genomic data into the electronic health record on genetics care delivery.

Security and privacy after September 11: the health care example

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Security and Privacy After September 11: The Health Care Example

Security and privacy after September 11: the health care example.

Impact of integrating genomic data into the electronic health record on genetics care delivery.

Security and privacy after September 11: the health care example