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Protecting personal data is becoming increasingly relevant as technology continues to advance, But many countries fail to meet the urgency of building the necessary legal protection. This Comment analyzes why current data privacy law in the United States is insufficient to shield the data of more than three hundred million citizens. Without comprehensive data privacy law, the sensitive data of Americans are at frequent security risk. Combating this risk is imperative. To do so, as this Comment will explain, the United States needs to learn from European, namely Swiss, advancement and pass comprehensive legislation. The American Data Privacy and Protection Act represents its best chance. [ABSTRACT FROM AUTHOR]

Despite the importance of measuring racial-ethnic segregation and diversity in the United States, current measurements are largely based on the Census and, thus, only reflect segregation and diversity as understood through residential location. This leaves out the social contexts experienced throughout the course of the day during work, leisure, errands, and other activities. The National Experienced Racial-ethnic Diversity (NERD) dataset provides estimates of diversity for the entire United States at the census tract level based on the range of place and times when people have the opportunity to come into contact with one another. Using anonymized and opted-in mobile phone location data to determine co-locations of people and their demographic backgrounds, these measurements of diversity in potential social interactions are estimated at 38.2 m × 19.1 m scale and 15-minute timeframe for a representative year and aggregated to the Census tract level for purposes of data privacy. As well, we detail some of the characteristics and limitations of the data for potential use in national, comparative studies. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic led to widespread disruption and termination of clinical research and a prompt adoption of mobile health (mHealth) technologies in the healthcare space. As the United States' healthcare system has rapidly become reliant on remotely conducted activities, the implementation of decentralized methods using mHealth technology in research investigation has become a necessary alternative to traditional in-person cohort studies. The aim of this article is to: report successful and unsuccessful examples of remote asthma clinical studies, explore the benefits and potential drawbacks of virtual clinical investigation, discuss the potential impact on equity and representation in asthma research, and provide suggestions through which investigators can implement decentralized clinical trials. Enhanced study accessibility, participant diversity, safety measures, and research efficacy are some of the benefits identified with a focused discussion on the impact on equity that decentralized clinical trials renders. Furthermore, potential concerns regarding regulatory compliance, data privacy, and effective mHealth design and solutions are discussed. Despite the setbacks and interruptions faced by the study participants and investigators due to the pandemic, the transition to decentralized clinical studies using mHealth technology is a positive, feasible step toward innovation and equity in the allergy and immunology field. [ABSTRACT FROM AUTHOR]

The purpose of this study is to understand the decision-making process that graduate students engage in when deciding whether to withhold or disclose information about mental health to their academic advisors. Guided by the principles of the phronetic iterative approach and Communication Privacy Management Theory, a thematic analysis of open-ended survey responses from 81 participants currently enrolled in graduate education revealed several privacy boundary rules used to determine whether to disclose private health information with advisors. Graduate students in this study enacted three motivational criteria (i.e., help-seeking, transparency, and relationship-building), two contextual criteria (i.e., relational closeness and relevance), and four risk–benefit ratios (i.e., anticipated advisor response, stigma, student emotional response, and advisor mental health) in creating privacy rule boundaries. These rules are discussed in terms of both theoretical and practical implications for the graduate student mental health crisis in the United States. [ABSTRACT FROM AUTHOR]

Purpose: ChatGPT has a wide range of applications in the medical field. Therefore, this review aims to define the key issues and provide a comprehensive view of the literature based on the application of ChatGPT in medicine. Methods: This scope follows Arksey and O'Malley's five-stage framework. A comprehensive literature search of publications (30 November 2022 to 16 August 2023) was conducted. Six databases were searched and relevant references were systematically catalogued. Attention was focused on the general characteristics of the articles, their fields of application, and the advantages and disadvantages of using ChatGPT. Descriptive statistics and narrative synthesis methods were used for data analysis. Results: Of the 3426 studies, 247 met the criteria for inclusion in this review. The majority of articles (31.17%) were from the United States. Editorials (43.32%) ranked first, followed by experimental studys (11.74%). The potential applications of ChatGPT in medicine are varied, with the largest number of studies (45.75%) exploring clinical practice, including assisting with clinical decision support and providing disease information and medical advice. This was followed by medical education (27.13%) and scientific research (16.19%). Particularly noteworthy in the discipline statistics were radiology, surgery and dentistry at the top of the list. However, ChatGPT in medicine also faces issues of data privacy, inaccuracy and plagiarism. Conclusion: The application of ChatGPT in medicine focuses on different disciplines and general application scenarios. ChatGPT has a paradoxical nature: it offers significant advantages, but at the same time raises great concerns about its application in healthcare settings. Therefore, it is imperative to develop theoretical frameworks that not only address its widespread use in healthcare but also facilitate a comprehensive assessment. In addition, these frameworks should contribute to the development of strict and effective guidelines and regulatory measures. [ABSTRACT FROM AUTHOR]

Background: Many different clinical specialists provide care to patients with Turner syndrome (TS), who have highly variable clinical manifestations. Therefore, a national TS registry is essential to inform a cohesive approach to healthcare and research. In 2015, the Turner Syndrome Society of the United States (TSSUS) created the Turner Syndrome Research Registry (TSRR) to engage directly with community participants who voluntarily provide longitudinal data about their experiences with TS. TSRR projects are collaborative partnerships between people with TS, TSSUS, and researchers. Results: To ensure that registry workflows conform to the data privacy choices of participants, TSSUS collaborated with UTHealth Houston in 2021 to create a new version of the TSRR that completely separates participant health data (stored at UTHealth) and personal identifiers (maintained at TSSUS). We developed an innovative Visual Basic (VB) script that, when embedded into Microsoft Outlook, redirects REDCap surveys through TSSUS to participants by matching registry IDs to participant email addresses. Additionally, the utilization of REDCap allows for portability of data as it is an open source platform. Conclusion: In this report, we will highlight three recent changes that more closely align the TSRR with this mission: a unique and equal collaborative partnership between UTHealth and TSSUS, an open-source platform, REDCap, that ensures data portability and compatibility across institutions, and an innovative survey routing system that retains participant confidentiality without sacrificing REDCap survey distribution capabilities to connect researchers with thousands of participants. [ABSTRACT FROM AUTHOR]

The article provides an overview of enacted state privacy laws in the U.S. as of March 2024. Topics discussed include similar scope requirements of the Iowa Consumer Data Protection Act (CDPA), Indiana CDPA, and the Tennessee Information Protection Act (IPA) and state privacy laws enacted in 2023 that have joined already existing comprehensive privacy laws in California, Colorado, Connecticut, Utah, and Virginia.

In the wake of the Dobbs decision, a seismic shift reverberates through the landscape of reproductive rights. As investigations into private healthcare decisions surge, states wield increasingly sophisticated tools to probe into the private lives of pregnant individuals, igniting a contentious debate on privacy and data security. The United States is entering a looming era where internet search histories, emails, text messages, and GPS data become ammunition in the arsenal of state-led investigations. Dubbed as "dragnet criminal surveillance tools," these tactics will unleash a torrent of prosecutions, raising profound questions about the sanctity of personal information in the digital age. As the boundaries of privacy blur and the specter of Orwellian intrusion looms larger, the stage is set for a clash between legal precedent and technological innovation in the realm of reproductive justice. This Article investigates the way in which recent court rulings and laws concerning data and privacy offer safeguards for forthcoming legal challenges post-Dobbs. With the proliferation of abortion inquiries due to state-level bans, the Fourth Amendment and Stored Communications Act offer vital protections against potential misuse of investigative methods, ensuring data and privacy rights are upheld. This Article begins by analyzing the theoretical risks to data privacy and security post-Dobbs, illuminating potential issues through hypothetical scenarios and real-world examples. Additionally, this Article examines historical perspectives via pivotal court cases and policies on data privacy, contextualizing them within today's landscape of protection. Ultimately, this Article, leveraging insights from both historical and contemporary viewpoints, contends that the current protective framework, grounded in the Fourth Amendment and the Stored Communications Act, serves as a safeguard against Dobbs-related challenges, particularly concerning technology-driven infringements on abortion-related matters. [ABSTRACT FROM AUTHOR]

The article discusses developments in state and local privacy laws in the U.S. from 2022 to 203. Topics include an overview of comprehensive data privacy laws passed in 2023 including Texas Act, Florida Act, and California Act, limited state and municipal data laws, and developments in litigation of state biometric privacy laws.

Private regulations are often presented as low-cost and flexible institutions that can act as policy incubators. In this article, I question under which conditions they go beyond legal compliance and experiment with new rules. Based on a content analysis of 126 data privacy regulations adopted between 1995 and 2016 in the European Union and the United States and thirty-five semistructured interviews, I show that most private regulations include no regulatory novelties. By disaggregating the temporal and spatial distribution of the few novelties, I add nuance to this overall finding and show that private regulations adopted in the United States before 2000 experimented more than others. I argue that this variation reflects the different demands for private regulation in the two jurisdictions and their evolution over time. In the European Union, the early adoption of privacy laws led public regulators and businesses to look for private regulations to reduce transaction costs and thus limited their interest in experimenting with new requirements. In the United States, businesses hoped to gain a first-mover advantage by including new data privacy rules in their private regulations. However, the growing use of private regulations to ease transnational data flows also led to their use as tools to reduce transaction costs. [ABSTRACT FROM AUTHOR]

Background: Electronic medical record software is common in healthcare settings. However, data privacy and security challenges persist and may impede patients' willingness to disclose health information to their clinicians. Positive patient-provider communication may foster patient trust and subsequently reduce information nondisclosure. This study sought to characterize information-withholding behaviors among women and evaluate the association between positive patient-provider communication and women's health information-withholding behavior in the United States. Methods: Data were pooled from the 2011 to 2018 Health Information National Trends Survey. We used descriptive statistics, bivariate, and logistic regression analyses to investigate whether positive patient-provider communication significantly impacted health information-withholding behaviors. Data from 7,738 women were analyzed. Results: About 10.8% or 1 in 10 women endorsed withholding health information from their providers because of privacy or security concerns about their medical records. After adjusting for the covariates, higher positive patient-provider communication scores were associated with lower odds of withholding information from the provider because of privacy and security concerns (aOR 0.93; 95% CI = 0.90–0.95). Additionally, we found that age, race/ethnicity, educational status, psychological distress, and smoking status significantly predicted women's willingness to disclose health information. Conclusions: Findings suggest that improving positive patient-provider communication quality may reduce women's privacy and security concerns and encourage them to disclose sensitive medical information. [ABSTRACT FROM AUTHOR]

As the healthcare industry continues to thrive competitively, organizations hold a great dependency on data, especially with the increase in cybersecurity regulations and potential privacy threats. When operating with electronic health information, the United States’ healthcare sector bears a significant amount of responsibility in order to ensure adequate cybersecurity protection. Organizations ought to ratify comprehensive cybersecurity frameworks and relevant standards that encompass the industry’s compliance needs and particular organizations’ security requirements. Health organizations are culpable and required by US law to enforce all necessary security measures and policies to safeguard patient data. This research study presents a narrative review of opportune cybersecurity frameworks, regulations, and their corresponding comparisons based on existing peer-reviewed papers in the healthcare cybersecurity landscape. The study further analyzes the selection of cybersecurity frameworks that sufficiently adhere to healthcare regulatory compliance and privacy conditions. The study examines how cybersecurity frameworks can be transformed to drive security enhancements in the healthcare sector. In consonance with the present research analysis, healthcare organizations can acquire significant advantages from the integration of HITRUST and NIST cybersecurity frameworks. In conclusion, the research demonstrates the detailed strategies that assist organizations to comply with US cybersecurity regulations and standards to ensure effective data privacy. [ABSTRACT FROM AUTHOR]

This paper examines the evolving global digital landscape from an African perspective. To do this, the paper problematises the concept of “digital sovereignty” in the African context by exploring the continent’s unique challenges. While investments by the United States (US) and particularly China in digital infrastructure projects have increased connectivity and improved lives, they raise ongoing concerns about Africa’s over-reliance on external partners and the implications of data exploitation and surveillance for the continent’s digital independence. Growing out of these concerns, the central argument of this paper is the need to delink African nation-states from foreign influence and control of the digital sector and to rearticulate or reframe the latter in terms of digital sovereignty. In this light, the paper contends that mainstream research on the Fourth Industrial Revolution in the African context does not sufficiently look past the power repertoires and dynamics of the US and China – whether blaming or crediting - when theorising digital sovereignty. Instead, the paper argues that to fully understand the African continent’s battle to establish and maintain a coherent framework for digital independence, it is essential to consider the challenges and constraints of digital sovereignty. Drawing on a review of extant literature, the paper springboards off a set of broad themes and case studies to deepen understanding and highlight key hurdles to Africa’s digital independence. The paper suggests that African nations must strive to overcome risks to digital sovereignty if the latter is to genuinely empower nation-states and citizens in the Fourth Industrial Revolution. [ABSTRACT FROM AUTHOR]

This article addresses data privacy issues as they relate to multisystem collaborations for prearrest deflection into treatment and services for those suffering from a substance use disorder. The authors explore how the US data privacy regulations pose barriers to collaboration and care coordination and how data privacy regulations affect researchers' ability to evaluate the impact of interventions intentioned to facilitate access to care. Fortunately, this regulatory landscape is evolving to strike a balance between protecting health information and sharing it for research, evaluation, and operations, including comments on the newly proposed federal administrative rule that will shape the future of deflection and health access in the United States. [ABSTRACT FROM AUTHOR]

Copyright of Policy & Internet is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Purpose: This study aims to profile mobile users based on their need for cognitive closure (NFC) (preference for order, preference for predictability, discomfort with ambiguity, close-mindedness and decisiveness) and identify differences among the groups regarding their perceptions of personalized preferences and privacy concerns. Design/methodology/approach: Based on the data from 285 participants, the authors seek to identify and profile unique consumer segments (mobile users) generated based on their NFC. Second, once the segments are established, the authors analyze how the segments differ across their personalized preferences and privacy concerns. Findings: The data generated three distinct consumer segments: equivocal users, structured users and eclectic users. Across the segments, there were differences in their mobile personalization (experience, value and actions) and preference for information privacy (perceived risks and fabrication of personal information). Research limitations/implications: United States (US)-based sample may restrict the generalizability of this research. Thus, future research should include participants from other geographic regions to increase external validity. Practical implications: Retail managers can apply this knowledge to implement appropriate personalization strategies for these distinct target groups. Originality/value: Segmenting clusters based on differences in consumption trait (NFC) provides key insights to retailers looking to deliver personalized customer experience, particularly in a mobile shopping context. [ABSTRACT FROM AUTHOR]

Self-measured blood pressure (SMBP) telemonitoring is the process of securely storing and tele-transmitting reliably measured, patient self-performed blood pressure (BP) measurements to healthcare teams, while ensuring that these data are viewable and clinically actionable for the purposes of improving hypertension diagnosis and management. SMBP telemonitoring is a vital component of an overall hypertension control strategy. Herein, we present a pragmatic guide for implementing SMBP in clinical practice and provide a comprehensive list of resources to assist with implementation. Initial steps include defining program goals and scope, selecting the target population, staffing, choosing appropriate (clinically validated) BP devices with proper cuff sizes, and selecting a telemonitoring platform. Adherence to recommended data transmission, security, and data privacy requirements is essential. Clinical workflow implementation involves patient enrollment and training, review of telemonitored data, and initiating or titrating medications in a protocolized fashion based upon this information. Utilizing a team-based care structure is preferred and calculation of average BP for hypertension diagnosis and management is important to align with clinical best practice recommendations. Many stakeholders in the United States are engaged in overcoming challenges to SMBP program adoption. Major barriers include affordability, clinician and program reimbursement, availability of technological elements, challenges with interoperability, and time/workload constraints. Nevertheless, it is anticipated that uptake of SMBP telemonitoring, still at a nascent stage in many parts of the world, will continue to grow, propagated by increased clinician familiarity, broader platform availability, improvements in interoperability, and reductions in costs that occur with scale, competition, and technological innovation. [ABSTRACT FROM AUTHOR]

The article examines several statutory developments and court decisions related to cybersecurity and data privacy law in the U.S. in 2022. Topics include state data privacy and security statutes enacted involving artificial intelligence that became effective or the most significant to practitioners, court activity around the Illinois Biometric Information Privacy Act (BIPA Act), and an update on other cyber and privacy litigations such as Fireman's Fund Insurance Co. v. OneBeacon Insurance Co.

The Supreme Court's decision to overturn Roe v. Wade has given rise to many uncertainties, including whether women's health data can be used as evidence in the prosecution of those who obtain an abortion. A notable percentage of young women in the United States use mobile applications to track their reproductive health. As the United States' privacy law is a patchwork framework, these apps are largely unregulated, and the sensitive user data remains unprotected and available to law enforcement. This Note examines the various preventative steps and responses taken to protect women's reproductive health data in the wake of the Dobbs decision. Further action, ranging from government action to user-controlled data minimization, is proposed to strengthen women's reproductive health data privacy. [ABSTRACT FROM AUTHOR]

Every one of the nearly 50 million students enrolled in the U.S. public school system has a permanent record. These records contain private information about academic performance, residency, physical and psychological health, and disciplinary history. Federal information privacy law governs these records and protects student privacy by ensuring that educational records are not disclosed to unauthorized third parties outside the school. This Article challenges the legal construction of information privacy in public education. It argues that the law's narrow focus on nondisclosure of information outside schools neglects information privacy violations that emerge within schools themselves. It further shows how the outcome of these privacy violations is often increased precarity for students along the lines of gender, race, class, and disability. By examining the intersection of information privacy law with multiple marginalized identities, this Article complicates an assumption embedded in the law that governs student records: That the schools that create, collect, and document student information should also be trusted to protect student privacy. This Article calls for an expanded understanding of information privacy to inform legal thought and action--one that accounts for the contested nature, purpose, and future of both official records and of public education. [ABSTRACT FROM AUTHOR]

U.S. policymakers’ responses to a wave of global data privacy laws are creating a deep structural unfairness in the criminal legal system. In an era of cloud computing, when data about communications and activities occurring anywhere in the world can be stored on servers located anywhere else, access to such data can make the difference between convictions and acquittals. At the same time, new global data privacy laws risk cutting off cross-border access to digital evidence in criminal investigations. Recognizing the threat to law enforcement interests, U.S. policymakers enacted the CLOUD Act of 2018 to create special procedures for law enforcement to circumvent foreign data privacy laws and access cross-border evidence anyway. Yet no one is creating similar procedures for criminal defense investigators. In the U.S. adversarial legal system, criminal defense counsel are the sole actors formally tasked with investigating evidence of innocence. While the prosecution team must disclose exculpatory evidence that it happens to possess, law enforcement officers have no formal duty to actively seek out such evidence. As a result, selectively advantaging law enforcement investigations of guilt without creating parallel procedures for the defense means selectively suppressing evidence of innocence. This asymmetry gets privacy backwards. Privacy protections ostensibly meant to constrain government power may accomplish that goal in an absolute sense, but relatively speaking, they specially empower the government as compared to the defense. They thereby undermine the criminal defense process that is itself supposed to guard against government abuse. This Article exposes this structural anti-defendant bias in U.S. responses to global data privacy laws. It then uses this problem as a case study to examine the constitutionality of a more general category of laws: privacy laws that disadvantage criminal defense investigations as compared to their law enforcement counterparts. It diagnoses why constitutional challenges to these types of laws have failed in the past and proposes a novel definitional argument to strengthen these challenges moving forward. Ironically, the very CLOUD Act procedures that exclude defense investigators also hold a key to advocating on their behalf. [ABSTRACT FROM AUTHOR]

The article discusses recent developments in data privacy regulations and reports related to the European Union (EU)-U.S. data transfers. The article mentions the European Data Protection Board's (EDPB) role in assessing the privacy framework, recent court decisions against technology companies, and proposed procedural regulations to enhance General Data Protection Regulation (GDPR) enforcement.

The article presents the results of a survey of privacy law-related developments in the U.S. The Utah Consumer Privacy Act enacted in March 2022 will take effect on December 31, 2023, while the data privacy law of Connecticut enacted in May 2022 will become effective on July 1, 2023. In July 2022, the California Privacy Protection Agency proposed new regulations to implement the California Privacy Rights Act and update rules issued under the California Privacy Rights Act.

Around the world, people increasingly generate data through their everyday activities. Much of this happens unwittingly through sensors, cameras, and other surveillance tools on roads, in cities, and at the workplace. However, how individuals and governments think about privacy varies significantly around the world. In this article, we explore differences between people's attitudes toward privacy and data collection practices in the United States and the Netherlands, two countries with very different regulatory approaches to governing consumer privacy. Through a factorial vignette survey deployed in the two countries, we identify specific contextual factors associated with concerns regarding how personal data are being used. Using Nissenbaum's framework of privacy as contextual integrity to guide our analysis, we consider the role that five factors play in this assessment: actors (those using data), data type, amount of data collected, reported purpose of data use, and inferences drawn from the data. Findings indicate nationally bound differences as well as shared concerns and indicate future directions for cross-cultural privacy research. [ABSTRACT FROM AUTHOR]

The discussion around personal privacy has only become more important in our modern, digitized world. In Europe, world leaders recognized the need for legal mechanisms to preserve personal data privacy in the wake of the Facebook Cambridge Analytica data scandal. Following suit in the United States, California and other States have passed their own legislation with similar laudable goals. However, the broad and sweeping effects of these laws means that businesses must shift resources from profitable uses into costly compliance regimes that, in some cases, are inconsistent with each other. This Comment discusses the burdens that these laws place on regulated businesses, as well as potential constitutional concerns. Finally, this Comment proposes that a federal standard be put in place in the United States to both ensure robust protection of consumers’ personal data and to decrease the substantial burdens that a patchwork of state law creates for businesses that must comply with them. [ABSTRACT FROM AUTHOR]

Objective: To understand which factors affect how willing people are to share their personal information to combat the Covid-19 pandemic, and compare them to factors that affect other public health behaviors. Method: We analyze data from three pre-registered online experiments conducted over eight months during the Covid-19 pandemic in the United States (April 3 2020 –November 25, 2020). Our primary analysis tests whether support for data sharing and intention to practice protective behavior increase in response to relationship-centered messages about prosociality, disease spread, and financial hardship. We then conduct a secondary correlational analysis to compare the demographic and attitudinal factors associated with willingness to share data, protective behavior, and intent to get vaccinated. Our sample (N = 650) is representative to socio-demographic characteristics of the U.S. population. Results: We find the altruistic condition increased respondents' willingness to share data. In our correlational analysis, we find interactive effects of political ID and socio-demographic traits on likelihood to share data. In contrast, we found health behavior was most strongly associated with political ID, and intent to vaccinate was more associated with socio-demographic traits. Conclusions: Our findings suggest that some public health messaging, even when it is not about data sharing or privacy, may increase public willingness to share data. We also find the role of socio-demographic factors in moderating the effect of political party ID varies by public health behavior. [ABSTRACT FROM AUTHOR]

Sharing data is a scientific imperative that accelerates scientific discoveries, reinforces open science inquiry, and allows for efficient use of public investment and research resources. Considering these benefits, data sharing has been widely promoted in diverse fields and neuroscience has been no exception to this movement. For all its promise, however, the sharing of human neuroimaging data raises critical ethical and legal issues, such as data privacy. Recently, the heightened risks to data privacy posed by the rapid advances in artificial intelligence and machine learning techniques have made data sharing more challenging; the regulatory landscape around data sharing has also been evolving rapidly. Here we present an in‐depth ethical and regulatory analysis that examines how neuroimaging data are currently shared against the backdrop of the relevant regulations and policies in the United States and how advanced software tools and algorithms might undermine subjects' privacy in neuroimaging data sharing. The implications of these novel technological threats to privacy in neuroimaging data sharing practices and policies will also be discussed. We then conclude with a proposal for a legal prohibition against malicious use of neuroscience data as a regulatory mechanism to address privacy risks associated with the data while maximizing the benefits of data sharing and open science practice in the field of neuroscience. Sharing data is a scientific imperative that accelerates scientific discoveries, reinforces open science inquiry, and allows for efficient use of public investment and research resources. But for all its promise, the sharing of human neuroimaging data raises critical ethical and legal issues, such as data privacy. Here we present an in‐depth ethical and regulatory analysis that will examine how neuroimaging data are currently shared against the backdrop of the relevant regulations and policies in the United States and how recent advances in software tools and algorithms might undermine subjects' privacy in neuroimaging data sharing. [ABSTRACT FROM AUTHOR]

In recent years both the United States and China have introduced data protection and cybersecurity frameworks to address the social, economic, and political challenges posed by the platform economy. While much of the discourse has focused on the implementation of these frameworks through top‐down, centrally administered institutions, little discussion has turned to the role of platform regulation from the bottom up—that is, the ability of individuals to affect corporate behavior through the courts as litigants. This paper attempts to address that gap by offering a comparative analysis of the role of data protection litigation in both the United States and China as one institutional mechanism through which governments may pursue their larger regulatory goals. Privacy and data protection laws in both countries grant individuals enforceable rights against other private and public actors. While litigants in the United States and China face barriers to affect corporate behavior, they do so for notable dissimilar reasons due to the unique and historical differences of the legal systems in both countries. Despite these differences, courts in both the United States and China will play an increasingly important role in platform regulation [ABSTRACT FROM AUTHOR]

Against the backdrop of an evolving landscape describing data driven research, this article discusses the role of data protection laws in shaping a free flow of research data. In particular, the analysis inquires whether European data protection law hampers or encourages data-driven research. The analysis critically challenges the shared belief that the more severe data protection regime laid down by the European legislator adversely affects data flows and with that data-driven research. This is contrary to what occurs in the United States, where the more fragmented and less developed data protection framework facilitates data flows and related innovation patterns. We show how research objectives through data re-usability have been very recently given primary importance in the GDPR, where they find a formidable ally enabling the re-usability of public data by businesses and of private data by public institutions, for either public interest-related research purposes or commercially oriented innovation purposes. We argue that the GDPR differently promotes research-valuable data flows in consistency with an emerging principle of free movement of personal data. In order to ground this statement, our analysis links to this principle three-directional research regimes emerging from the GDPR. [ABSTRACT FROM AUTHOR]

The modern digital world relies on the instantaneous transfer of data. This digital highway is essential for the growth of the modern digital economy and contributes to the rise of globalization. In order to facilitate these data transfers, ground rules must first be put into place. To date, there are few, if any, binding international data privacy agreements. This is in part due to practical considerations, such as high administrability costs, inadequate enforcement agencies, and complex jurisdictional procedures. More fundamentally, however, this is due to competing incentive structures, as countries are incentivized to protect their own digital sovereignty by limiting the transfer of their own data, but also wish to accept the data flowing from other countries. The result is a zero-sum game between local data protectionism and free crossborder data flows. To understand how these incentive structures function and how to resolve various gridlocks, this Note delves into the Safe Harbor Agreement between the United States and the European Union and applies an analytical game theory approach to track the agreement’s formation and its eventual breakdown. This Note concludes by proposing several potential solutions to overcome the obstacles preventing the successful implementation of international data privacy agreements. [ABSTRACT FROM AUTHOR]

Background: The security and privacy of health care information are crucial for maintaining the societal value of health care as a public good. However, governance over electronic health care data has proven inefficient, despite robust enforcement efforts. Both federal (HIPAA [Health Insurance Portability and Accountability Act]) and state regulations, along with the ombudsman rule, have not effectively reduced the frequency or impact of data breaches in the US health care system. While legal frameworks have bolstered data security, recent years have seen a concerning increase in breach incidents. This paper investigates common breach types and proposes best practices derived from the data as potential solutions., Objective: The primary aim of this study is to analyze health care and hospital breach data, comparing it against HIPAA compliance levels across states (spatial analysis) and the impact of the Omnibus Rule over time (temporal analysis). The goal is to establish guidelines for best practices in handling sensitive information within hospitals and clinical environments., Methods: The study used data from the Department of Health and Human Services on reported breaches, assessing the severity and impact of each breach type. We then analyzed secondary data to examine whether HIPAA's storage and retention rule amendments have influenced security and privacy incidents across all 50 states. Finally, we conducted a qualitative analysis of textual data from vulnerability and breach reports to identify actionable best practices for health care settings., Results: Our findings indicate that hacking or IT incidents have the most significant impact on the number of individuals affected, highlighting this as a primary breach category. The overall difference-in-differences trend reveals no significant reduction in breach rates (P=.50), despite state-level regulations exceeding HIPAA requirements and the introduction of the ombudsman rule. This persistence in breach trends implies that even strengthened protections and additional guidelines have not effectively curbed the rising number of affected individuals. Through qualitative analysis, we identified 15 unique values and associated best practices from industry standards., Conclusions: Combining quantitative and qualitative insights, we propose the "SecureSphere framework" to enhance data security in health care institutions. This framework presents key security values structured in concentric circles: core values at the center and peripheral values around them. The core values include employee management, policy, procedures, and IT management. Peripheral values encompass the remaining security attributes that support these core elements. This structured approach provides a comprehensive security strategy for protecting patient health information and is designed to help health care organizations develop sustainable practices for data security., (©Hemang Subramanian, Arijit Sengupta, Yilin Xu. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 06.11.2024.)

Background: Combining patient-generated health data and digital health platforms may improve patient experience and population health, mitigate rising health care costs, reduce clinician burnout, and enable health equity. However, lack of trust may be a notable barrier to the data-sharing required by such platforms. Understanding sociodemographic, health, and personal characteristics will enable developers and implementers of such technologies to consider these in their technical design requirements., Objective: This study aims to understand relationships between sociodemographic characteristics of caregivers of children or adolescents and trust in and willingness to use digital platforms to store and share personal health information for clinical care and research., Methods: This study used a mixed methods approach, including surveys of caregivers of youth aged <18 years living in Canada or the United States and youth aged 16 to 17 years living in Canada, as well as web-based bulletin board discussions to further explore topics of trust in data sharing. Sociodemographic and survey data were tabulated and explored using proportional odds ordinal regression models. Comments from web-based group discussions were analyzed thematically using a coding approach to identify issues important to the participants., Results: Survey data from 1128 caregivers (female participants: n=549, 48.7%; 36-50 years old: n=660, 58.5%; Canadian: n=603, 53.5%; urban population: n=494, 43.8%) were collected, of which 685 (60.7%) completed all questions. Data from 173 youth (female participants: n=73, 42.2%; urban population: n=94, 54.3%) were collected, of which 129 (74.6%) completed all questions, and data were available for analysis. Furthermore, among 40 participants, 23 (58%) caregivers contributed to the web-based discussion boards. Related to trust, living in a rural area (vs urban; odds ratio [OR] 0.66, 95% CI 0.46-0.95) resulted in lower concern for data privacy and security, while having an undergraduate (OR 1.82, 95% CI 1.30-2.55) or graduate degree (vs secondary or trade school; OR 2.50, 95% CI 1.68-3.73) resulted in higher levels of concern. Living with a chronic disease (OR 1.81, 95% CI 1.35-2.44) increased levels of concern regarding data privacy and security. Interestingly, those with chronic disease were more willing to use digital platforms for clinical care and share personal health information for not-for-profit research. Caregivers were most concerned about data breaches involving data from their children but also highlighted that digital platforms would allow for better coordination of care for their children., Conclusions: Our research confirms the willingness of caregivers and youth to use digital platforms for both clinical care delivery and research and suggests that the value of a digital platform may outweigh the risks of its use. Engagement of end users in co-designing such platforms has the potential to enhance digital trust. However, digital trust varies across sociodemographic groups; therefore, diverse end user engagement is necessary when designing digital applications., (©Eric Chow, Alice Virani, Susan Pinkney, Fatema S Abdulhussein, Tibor van Rooij, Matthias Görges, Wyeth Wasserman, Jeffrey Bone, Holly Longstaff, Shazhan Amed. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 28.10.2024.)

In the long-awaited Schrems II decision, the Court of Justice of the European Union (CJEU) took a radical, although not an unexpected, step in invalidating the Privacy Shield Agreement, which facilitated data transfers between the European Union and the United States. Schrems II illuminates long-lasting international disagreements between the EU and the United States over data protection, national security, and the fundamental differences between the public and private approaches to the protection of human rights in the data-driven economy and modern state. This Article approaches the decision via an interdisciplinary lens of international law and international relations and situates it in a broader historical context. In particular, I rely on the historical institutionalist approach, which emphasizes the importance of time and timing (also called sequencing) as well as institutional preferences of different actors to demonstrate that the Schrems II decision further solidifies and cements CJEU's principled approach to data protection, rejecting data securitization and surveillance in the post-Snowden era. Schrems II aims to rebalance the terms of international cooperation in data sharing across the Atlantic and beyond. It is the outcome that US tech companies and the government feared. Yet, they are not the only actors displeased with the decision. An institutionalist emphasis illuminates that the EU is not a monolithic block, and that the Schrems II outcome is also contrary to the strategy and preferences of the EU Commission. The invalidation of the Privacy Shield will now (again) require either a reorientation of EU policy and priorities or an accommodation of the institutional preferences of its powerful political ally----the United States. The CJEU decision runs counter to the European Data Strategy and places a $7.1 trillion transatlantic economic relationship at risk. Historical institutional analysis suggests that structural changes in the US legal system to address the inadequacies in the Schrems II judgment are unlikely. Therefore, the EU Commission will act quickly to create a solution----another quick, contractual "fix"----to accommodate US exceptionalism and gloss over the decades of disagreement between the EU and United States over data protection, national security, and privacy. When two powerful actors are unwilling to change their institutional preferences, "contracting out" the protection of human rights in international law is the most convenient option. [ABSTRACT FROM AUTHOR]

Data from digital technologies are increasingly integrated in public health research. In April of 2020, we interviewed a subset of participants (N = 25) who completed a survey approximately one month earlier (just prior to the declaration of the COVID-19 pandemic in the United States). Using the survey, we contacted and interviewed participants who had expressed their willingness or unwillingness to share digital data (e.g., from contact tracing apps) for use in public health. We followed a directed content analysis approach for the analysis of the interview data. Among participants who had reported being unwilling to share data, concerns about privacy, confidentiality, and the purpose of the research were cited. During the interviews, 76.9% of the participants who had who had previously indicated that they were unwilling to share their data, expressed willingness to share data in order to assist with COVID-19 prevention. Our results contribute to our understanding of people's perspectives on sharing personal data and of the way their perspectives can vary as a function of potential uses of their personal information (e.g., prevention of COVID-19). [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has brought the long-standing public health practice of contact tracing into the public spotlight. While contact tracing and case investigation have been carefully designed to protect privacy, the huge volume of tracing which is being carried out as part of the pandemic response in the United States is highlighting potential concerns around privacy, legality, and equity. Contact tracing during the pandemic has gained particular attention for the new use of digital technologies—both on the consumer side in the form of Exposure Notification applications, and for public health agencies as digital case management software systems enable massive scaling of operations. While the consumer application side of digital innovation has dominated the news and academic discourse around privacy, people are likely to interact more intensively with public health agencies and their use of digital case management systems. Effective use of digital case management for contact tracing requires revisiting the existing legal frameworks, privacy protections, and security practices for management of sensitive health data. The scale of these tools and demands of an unprecedented pandemic response are introducing new risks through the collection of huge volumes of data, and expanding requirements for more adept data sharing among jurisdictions. Public health agencies must strengthen their best practices for data collection and protection even in the absence of comprehensive or clear guidance. This requires navigating a difficult balance between rigorous data protection and remaining highly adaptive and agile. [ABSTRACT FROM AUTHOR]

The article examines the Rosenbach case's interpretation and application of Illinois' Biometric Information Privacy Act (BIPA) as well as the gaps left by the decision. Topics discussed include gaps that remain despite the overlap between BIPA and the California Consumer Privacy Act (CCPA), and methods that courts and legislatures could use to promote the legislative intent behind BIPA and CCPA.

This study explores privacy issues complicated by the commodification of consumer health data in the United States by looking into loyalty programs (LPs). Three LPs – those of Nike, Walgreens, and DICK'S Sporting Goods – are examined because their incorporation of health technology represents retail data practices unregulated by the U.S. Health Information Portability and Accountability Act (HIPAA). Applying the framework of contextual integrity (Nissenbaum, 2004, 2009), the research conducted discourse analysis on corporate communications to identify whether and how privacy conflicts arise in a data economy composed of multiple business entities that use LP member data. The major contributions of this study are a clarification of shortfalls in multi-organizational governance of health-related consumer data outside the HIPAA regulation in the United States, and a recognition that businesses may optimize this data without adequately informing consumers about the risks and providing meaningful redress mechanisms. The paper concludes by urging policy-makers to target networked business relationships and externalities that result from collective behavior of firms trading in consumer health data. • Consumer loyalty programs expand beyond one brand and one consumer in the digital age. • Loyalty programs are increasingly entangled with health technologies like wearables. • Discourse analysis shows how loyalty programs naturalize more parties to member data. • Brands unevenly communicate consumer benefits and privacy risks of loyalty programs. • Loyalty programs point to need for system-level policy approaches to data governance. [ABSTRACT FROM AUTHOR]

This study examines the motivations of refugee-background adults in participating in English language classes in the United States. Five focus group discussions were held with refugee-background adults with no or very limited English proficiency who were enrolled in an English language program in an urban area in the Northeastern region of the United States. The study participants had been resettled in the United States for between 10 months and 4 years at the time of study and were of different nationalities, including Somalia, Yemen, Myanmar, Cuba, and Sudan. While agencies and organizations funding and running these English programs have generally focused on job readiness English language skills in their curriculums, this study found that refugees had a wide range of motivations for learning English. In addition to better paying jobs, refugees were also interested in learning English to better navigate the health care system and safeguard their privacy, become self-reliant and avoid the humiliation of public assistance, enable self-advocacy in various settings, pass the United States citizenship test, and to provide English language support for family and neighbors. Based on these findings, the study recommends that these language programs intensify collaborative learning activities that invite and incorporate the experiences, perspectives, and expectations of refugee participants in the design, execution, and assessment of these programs. [ABSTRACT FROM AUTHOR]

The article offers perspectives on the current state of data privacy regimes in the world's four highest gross domestic product (GDP) regions such as the U.S., China, Japan and the European Union (EU). Topics include the drawbacks to some of the common themes that emerge from the data privacy legislation and regulation of the four countries, the benefits offered by the data privacy regimes to individuals, and the potential solutions proposed to this emerging global governance problem.

The usage of smartphones and apps to communicate, retrieve information, locate places, and entertain is a norm today. However, to this day, many users are unaware of, or indifferent to, how smartphones (and other mobile devices such as tablets, fitness trackers, or smartwatches) could possibly breach their mobile privacy. This case study investigates and compares mobile privacy behavior and attitude of library and information science students from the School of Communication and Information, Rutgers, the State University of New Jersey, U.S.A., with library and information science students from the Berlin School of Library and Information Science, Humboldt-Universität zu Berlin, Germany. Qualitative ethnographic research methods such as interviews, participant observation, and an experiment were conducted between 2017 and 2018 both in Germany and the U.S.A. The findings reveal that there are nearly no cultural differences in mobile privacy behavior and attitude between participants. In fact, this study discovers and discerns different mobile privacy typologies. These typologies, ranging from "mobile privacy objection" to "mobile privacy learned helplessness" reveal how they impact German and American students' privacy behavior and attitude in a similar fashion. The lack of significant differences between German and American library and information science students suggests that more could be done to raise privacy awareness, especially for mobile computing and emergent technologies such as facial recognition and A.I. [ABSTRACT FROM AUTHOR]

This study analyzes library policies pertaining to the preservation of privacy on public use computers. A random sample of 1000 public libraries, selected from an initial population of over 8000 listed in the Institution of Museum and Library Services' Public Libraries Survey, was analyzed to identify 1) what percentage of these libraries has a publicly available policy for patron data privacy on public use computers? 2) what elements are included in these policies? 3) how are the policies communicated (are they available on the library's website, or only in-person/by request)? 4) Are there common characteristics among the content of privacy policies used by different groups of libraries? A mixture of basic statistical findings and the results of a cluster analysis based on the text data within the privacy policies are provided. Informed by the findings of this analysis, guidance for the development of more detailed and agile public computer data policies is provided. [ABSTRACT FROM AUTHOR]

The article presents the discussion on January 6th attack on the US Capitol by right-wing protestors. Topics include posts on various social media platforms urging the networks for reporting information law enforcement in support of arresting the people involved in the attack; and general populace remains supportive of surveillance measures in service of homeland security, border control, and policing.

Data portability is one of the most unprecedented and innovative aspects of Europe's GDPR and California's CCPA. Widespread adoption of data portability is not slowing down. Privacy bills in Congress submitted by both Democrats and Republicans include data portability as a right. Several proposed state and international privacy laws also call for the right to data portability. This article examines the right to data portability and the inherent tension between its anti-competitive and privacy/cybersecurity features. While data portability can help foster innovation and competition, it also poses several risks of data getting into the wrong hands. First, this article will examine the background of data portability. This will explore smaller-scale sectoral examples of data portability and the history of comprehensive data portability. Second, this article will review practical risks of data portability, including which data should be included, whose data should be included, and who can choose to port data. Finally, this article will discuss security risks of data portability. This article will suggest various solutions to mitigate security risks, including portability impact assessments (first proposed by Peter Swire), solutions from the financial industry, and self-regulatory regimes. [ABSTRACT FROM AUTHOR]

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In today's world, which is also defined as the "Communication Age", information technologies are developing day by day. The main purpose of these developments is to make communication needs easier and more common among people all over the whole world. In this context, Internet network has reached almost the entire world. Social media sites, which are the most common and effective platforms of the Internet network, and their hidden substrates are the areas where most of the social relations take place; however, there are some data security and privacy issues regarding the social and private relationships in this area. This is also called "digital privacy". Unfortunately, such exploitations are not limited to the fact that some users have access to others' private information, and misuse them in various ways. More importantly, the personal information of all users is recorded and archived in main bases of the Internet network, and social media sites in the United States. It is not possible to make exactly sure whether this private information is used against users or whether there will be such a risk in the future. Therefore, users who value their personal privacy and future should strictly avoid sharing private information, documents, pictures, and videos on social media. [ABSTRACT FROM AUTHOR]

Explosive growth in technology has brought a unique opportunity to the doors of brick-and-mortar retail--a nearly $3.38 trillion industry struggling to regain relevance among modern, digitally enabled shoppers. Specifically, in-store analytics, or shopper tracking technologies, are allowing these retailers to better compete with online stores by tapping into consumer data unprecedented in the brick-and-mortar context. With these technologies, stores now have access to detailed metrics, like consumer dwell times, journeys, product engagement, product views, and demographic data such as age and gender, which can be used to optimize store operations and marketing and promotions. Recent events, however, including a string of data breaches and the passage of strict privacy laws in Europe and California, have renewed efforts for broad information privacy reform that could have deleterious consequences for these technologies. This Note examines the current state of privacy law; two approaches to information privacy reform that appeared before the 116th Congress, namely consumer control and business accountability; and the potential impact of these two regulatory approaches on in-store analytics technologies. It concludes that properly balancing consumer privacy and business interests through regulation requires more than a one-size-fits-all federal band-aid. Instead, it proposes starting with targeted federal acts aimed at the bigger gaps and outliers in existing information privacy law, like brick-and-mortar technologies. Addressing in-store analytics, specifically, it recommends federal regulation focused on business-accountability and expanded FTC powers, and it outlines specific considerations for a targeted act. [ABSTRACT FROM AUTHOR]