scholarly journals Trust and The Acquisition and Use of Public Health Information

2021 ◽  
Author(s):  
Stephen Holland ◽  
Jamie Cawthra ◽  
Tamara Schloemer ◽  
Peter Schröder-Bäck
Keyword(s):  
Public Health ◽  
Health Information ◽  
Data Privacy ◽  
Empirical Work ◽  
Personal Data ◽  
Health Data ◽  
Privacy Concerns ◽  
External Threats ◽  
Trust In Institutions ◽  
The Way

AbstractInformation is clearly vital to public health, but the acquisition and use of public health data elicit serious privacy concerns. One strategy for navigating this dilemma is to build 'trust' in institutions responsible for health information, thereby reducing privacy concerns and increasing willingness to contribute personal data. This strategy, as currently presented in public health literature, has serious shortcomings. But it can be augmented by appealing to the philosophical analysis of the concept of trust. Philosophers distinguish trust and trustworthiness from cognate attitudes, such as confident reliance. Central to this is value congruence: trust is grounded in the perception of shared values. So, the way to build trust in institutions responsible for health data is for those institutions to develop and display values shared by the public. We defend this approach from objections, such as that trust is an interpersonal attitude inappropriate to the way people relate to organisations. The paper then moves on to the practical application of our strategy. Trust and trustworthiness can reduce privacy concerns and increase willingness to share health data, notably, in the context of internal and external threats to data privacy. We end by appealing for the sort of empirical work our proposal requires.

scholarly journals Privacy, security, and the public health researcher in the era of electronic health record research

2016 ◽  
Vol 8 (3) ◽  
Author(s):  
Neal D Goldstein ◽  
Anand D Sarwate
Keyword(s):  
Public Health ◽  
Data Privacy ◽  
Large Scale ◽  
Health Data ◽  
Shared Responsibility ◽  
Privacy And Security ◽  
The Public ◽  
Health Researcher ◽  
Public Health Researcher ◽  
Electronic Health

Health data derived from electronic health records are increasingly utilized in large-scale population health analyses. Going hand in hand with this increase in data is an increasing number of data breaches. Ensuring privacy and security of these data is a shared responsibility between the public health researcher, collaborators, and their institutions. In this article, we review the requirements of data privacy and security and discuss epidemiologic implications of emerging technologies from the computer science community that can be used for health data. In order to ensure that our needs as researchers are captured in these technologies, we must engage in the dialogue surrounding the development of these tools.

scholarly journals That’s Private! Understanding Travelers’ Privacy Concerns and Online Data Disclosure

2020 ◽  
pp. 004728752095164
Author(s):  
Athina Ioannou ◽  
Iis Tussyadiah ◽  
Graham Miller
Keyword(s):  
Data Privacy ◽  
Personal Information ◽  
Empirical Studies ◽  
Personal Data ◽  
Tourism Industry ◽  
Online Data ◽  
Biometric Data ◽  
Identity Verification ◽  
Privacy Concerns ◽  
Travel And Tourism

Against the backdrop of advancements in technology and its deployment by companies and governments to collect sensitive personal information, information privacy has become an issue of great interest for academics, practitioners, and the general public. The travel and tourism industry has been pioneering the collection and use of biometric data for identity verification. Yet, privacy research focusing on the travel context is scarce. This study developed a valid measurement of Travelers’ Online Privacy Concerns (TOPC) through a series of empirical studies: pilot ( n=277) and cross-validation ( n=287). TOPC was then assessed for its predictive validity in its relationships with trust, risk, and intention to disclose four types of personal data: biometric, identifiers, biographic, and behavioral data ( n=685). Results highlight the role of trust in mitigating the relationship between travelers’ privacy concerns and data disclosure. This study provides valuable contribution to research and practice on data privacy in travel.

scholarly journals Genetic Data Privacy Solutions in the GDPR

2019 ◽  
Vol 7 (1) ◽  
pp. 269-297 ◽  
Author(s):  
Kristi Harbord
Keyword(s):  
Data Privacy ◽  
Large Scale ◽  
Genetic Data ◽  
Health Data ◽  
Genetic Privacy ◽  
Private Companies ◽  
Privacy Concerns ◽  
Direct To Consumer ◽  
Consumer Data ◽  
Doctor's Office

The intersection of healthcare and technology is a rapidly growing area. One thriving field at this intersection involves obtaining, processing, and storing genetic data. While the benefits have been great, genetic information can reveal a great deal about individuals and their families. And the information that can be conveyed from genetic data appears limitless and is constantly growing and changing. Many entities have begun storing, processing, and sharing genetic data on a very large scale. This creates many privacy concerns that the current regulatory framework does not account for. The line between patient data and consumer data is blurred; many entities are interested in obtaining genetic data with varied interests. In the direct-to-consumer genetic testing market, consumers pay to send private companies their DNA samples in exchange for a trivial amount of information about their ancestry and health risks. But health data obtained and processed by a company are subjected to far less stringent privacy regulations than health data obtained and processed at a doctor’s office or hospital. This Comment summarizes some of the current genetic privacy problems in United States laws and examines the EU’s recently adopted GDPR for a possible solution. A GDPR-style regulation could provide more consistency, give individuals more control, and protect against future unknown uses.

scholarly journals Transforming Public Health Surveillance Through Open Public Health Information

2018 ◽  
Vol 10 (1) ◽  
Author(s):  
Janelle Kibler ◽  
Scott McNabb ◽  
James Lavery ◽  
Ziad Memish ◽  
Affan Shaikh ◽  
...  
Keyword(s):  
Public Health ◽  
Health Information ◽  
Public Health Surveillance ◽  
Public Health Practice ◽  
Health Data ◽  
Health Surveillance ◽  
Health Practice ◽  
Public Health Data ◽  
Health Authorities ◽  
Public Health Information

ObjectiveThe goal of this editorial is to shed light on the lack of transparency that exists in the sharing of Public Health data and to reverse this presumption in favour of open public health information properly vetted and openly accessible. Open public health information is a critical step to revitalize public health practice and is a human right.IntroductionPublic health practice that prevents, detects, and responds to communicable and noncommunicable disease threats is hindered by poor access to public health data and information. This includes timely sharing of case-based information, respecting patent and publication rights, and the ethical sharing of specimens. Disagreements about information shared and under what circumstances plus who has right to the data, clinical specimens, and their derivative products impede research and countermeasures. Delayed or inaction by public health authorities undermines trust and exacerbates the crisis. Evident in 2014 by the delayed Public Health Emergency of International Concern declaration of the Ebola virus outbreak in West Africa by the World Health Organization, the governing presumption is that access to public health information should be restricted, constrained, or even hoarded; this is a failed approach. This lack of transparency prevents information availability when and where it is needed and obstructs public health efforts to efficiently and ethically prevent, detect, and respond to emerging threats. A better way forward is to reverse this presumption in favour of open public health information properly vetted and openly accessible. Open public health information is a critical step to revitalize public health practice and is a human right.While there is limited global consensus among scientists and public health practitioners on best practices to guide national health authorities, researchers, NGOs, and industry as they navigate the ethical, political, technical, and economic challenges associated with the sharing of essential public health information (e.g., pathogen isolates, clinical specimens, and patient-related data), grounding this discussion on the guiding principles of open public health information can help navigate the complex privacy, security, communication, and access needs, and ensure that collaboration and sharing occur in a manner that is ethically and socially just, efficient, and equitable. Built on existing governance frameworks such as the International Health Regulations (IHRs) and the Pandemic Influenza Preparedness Framework (PIP), open public health can transform public health surveillance, allowing for the rapid sharing of data and products during outbreaks for mutual benefit and enhanced global health security.MethodsThis abstract represents a larger editorial style manuscript, thus no methods were developed in the abstract.ResultsThis editorial style manuscript aims to reverse the presumption that public health data is damaging to one in favour of open public health information properly vetted and openly accessible.ConclusionsSimilar to other open movements (i.e., open data, open government, open development, and open science) that seek to address the world’s greatest challenges through transparency, collaboration, reuse of and free access to ideas, open public health offers an ideal solution to overcome the challenges in the 21st century.

Data Ownership

2021 ◽  
pp. 60-82
Author(s):  
Thora Knight
Keyword(s):  
Intellectual Property ◽  
Information Sharing ◽  
Data Privacy ◽  
Personal Data ◽  
Legal Framework ◽  
Legal Issues ◽  
Privacy Concerns ◽  
Wearable Technologies ◽  
Regulatory Climate ◽  
Health Laws

This chapter explores legal issues concerning ownership of data collected, shared, used, and transmitted via wearable technologies. Such widespread information sharing raises privacy concerns that existing legal protections do not address. The author analyzes prevailing legal regulatory climate surrounding data privacy, such as health laws and privacy policies. Next, the author highlights the inadequacy of these legal instruments and explicate the legal framework of intellectual property laws to determine ways to provide individuals with more control over their personal data.

Wearable Devices and Privacy Concerns

2021 ◽  
pp. 208-230
Author(s):  
Ersin Dincelli ◽  
Xin Zhou ◽  
Alper Yayla ◽  
Haadi Jafarian
Keyword(s):  
Data Collection ◽  
Social Networking ◽  
Data Analytics ◽  
Data Privacy ◽  
Personal Data ◽  
Wearable Devices ◽  
Physical Activities ◽  
Lifestyle Habits ◽  
Privacy Concerns ◽  
Daily Physical Activities

Wearable devices have evolved over the years and shown significant increase in popularity. With the advances in sensor technologies, data collection capabilities, and data analytics, wearable devices now enable interaction among users, devices, and their environment seamlessly. Multifunctional nature of this technology enables users to track their daily physical activities, engage with other users through social networking capabilities, and log their lifestyle habits. In this chapter, the authors discuss the types of sensor technologies embedded in wearable devices and how the data collected through such devices can be further interpreted by data analytics. In parallel with abundance of personal data that can be collected via wearable devices, they also discuss issues related to data privacy, suggestions for users, developers, and policymakers regarding how to protect data privacy are also discussed.

Exploitative abuses in digital markets: between competition law and data protection law

2020 ◽  
Author(s):  
Miriam Caroline Buiten
Keyword(s):  
Market Power ◽  
Data Protection ◽  
Data Privacy ◽  
Personal Data ◽  
Competition Law ◽  
Privacy Concerns ◽  
Online Platforms ◽  
Data Protection Law ◽  
Collection Practices ◽  
Abuse Of Dominance

Abstract Online platforms increasingly offer consumers services ‘for free’, in exchange for collecting consumers’ personal data. This business model is highly successful, leading some online platforms to gain substantial market power. This market power can cause consumer harm—not through higher prices, but in the form of privacy harm. This article considers what role competition law and data protection law can play in mitigating this harm to privacy. The article considers how we can conceptualize exploitative abuse of dominance cases in zero-price markets. The article calls into question if data protection laws should play a role in antitrust abuse assessments, against the background of the Bundeskartellamt antitrust investigation into Facebook’s data collection practices. The article argues that, even in digital markets that unequivocally link market power with data privacy concerns, competition law and data protection law have complementary but distinct roles to play.

scholarly journals Increasing resilience via the use of personal data: Lessons from COVID-19 dashboards on data governance for the public good

Data & Policy ◽  
2021 ◽  
Vol 3 ◽  
Author(s):  
Veronica Qin Ting Li ◽  
Masaru Yarime
Keyword(s):  
Public Health ◽  
Hong Kong ◽  
Data Privacy ◽  
Research Question ◽  
Personal Data ◽  
Structured Interviews ◽  
Data Governance ◽  
Health Crisis ◽  
The Public ◽  
Trade Offs

Abstract Contemporary data tools such as online dashboards have been instrumental in monitoring the spread of the COVID-19 pandemic. These real-time interactive platforms allow citizens to understand the local, regional, and global spread of COVID-19 in a consolidated and intuitive manner. Despite this, little research has been conducted on how citizens respond to the data on the dashboards in terms of the pandemic and data governance issues such as privacy. In this paper, we seek to answer the research question: how can governments use data tools, such as dashboards, to balance the trade-offs between safeguarding public health and protecting data privacy during a public health crisis? This study used surveys and semi-structured interviews to understand the perspectives of the developers and users of COVID-19 dashboards in Hong Kong. A typology was also developed to assess how Hong Kong’s dashboards navigated trade-offs between data disclosure and privacy at a time of crisis compared to dashboards in other jurisdictions. Results reveal that two key factors were present in the design and improvement of COVID-19 dashboards in Hong Kong: informed actions based on open COVID-19 case data, and significant public trust built on data transparency. Finally, this study argues that norms surrounding reporting on COVID-19 cases, as well as cases for future pandemics, should be co-constructed among citizens and governments so that policies founded on such norms can be acknowledged as salient, credible, and legitimate.

Privacy Challenges in the Use of eHealth Systems for Public Health Management

2012 ◽  
pp. 155-166 ◽  
Author(s):  
Karpurika Raychaudhuri ◽  
Pradeep Ray
Keyword(s):  
Public Health ◽  
Data Collection ◽  
Infectious Diseases ◽  
Information Management ◽  
Data Privacy ◽  
Health Management ◽  
Health Needs ◽  
Patient Privacy ◽  
Privacy Concerns ◽  
Public Health Management

Privacy is a major issue in information management for public health needs. For example, the surveillance of infectious diseases, such as HIV, is an important function of public health and it presents major privacy concerns for affected people. While their privacy must be protected, privacy concerns should not come in the way of effective data collection and surveillance. In this paper, the authors present a survey of published work covering privacy challenges in the use of eHealth systems, especially in the context of public health management. The authors identify and present the major privacy challenges, their effects on personal patient privacy and public health management based on the review of research in electronic data privacy and eHealth privacy. The authors also present a survey of privacy-preserving technologies and solutions that address these challenges.

Privacy

2019 ◽  
Author(s):  
Ronald M. Baecker
Keyword(s):  
Data Storage ◽  
Data Privacy ◽  
New Technologies ◽  
Personal Data ◽  
Information Privacy ◽  
Privacy Concerns ◽  
Dystopian Literature ◽  
Computer Scientists ◽  
Government Surveillance ◽  
The 1960S

Fears about loss of privacy in computerized societies have been central to dystopian literature. The issue has also concerned thoughtful computer scientists and lawyers since the 1960s. By then, the scope of the computer revolution was making clear that governments and corporations could keep records about almost every aspect of our lives. As data storage became virtually limitless at trivial cost, effective uses of data grew, as did risks to personal privacy. We shall define privacy, look at its manifestations and roles, and discuss current and future threats to it. We shall introduce concepts that are key to understanding privacy, such as informed consent. A major concern is the threats to information privacy or data privacy, in which a person’s confidential information has errors or becomes exposed to people who should not be able to see or use it. We shall examine situations in which privacy can be invaded by governments, organizations, and individuals. Governments amass vast stores of personal data during the everyday course of administration and regulation. Government surveillance in many nations captures information that should be private, a topic we discussed in Chapter 6. Search engines, credit rating organizations, and insurance companies also gather huge amounts of data on consumers. When data is incorrect, or is hacked, there are serious implications for information privacy. Criminals seek to gain leverage by ferreting out computer-based data about personal financial transactions. Health information is a particularly sensitive area in which many people feel especially vulnerable. These are all ‘classical’ privacy concerns, the dangers of which were evident in the 1960s. New technologies have raised more concerns. Social media holds vast quantities of personal data that we have willingly disclosed, including information that could prove embarrassing later in life. A vivid example of a privacy breech was the Cambridge Analytica/Facebook scandal of 2018. New technologies raise new privacy concerns. Chips use GPS to track our location and movements. Recent advances in computer vision and the widespread deployment of video cameras enable face recognition. Chips located in the environment and embedded as sensors and prostheses in our bodies make our activities and even our moods accessible by others.

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