A Literature Review on the GDPR, COVID-19 and the Ethical Considerations of Data Protection During a Time of Crisis.

OBJECTIVE: This survey article presents a literature review of relevant publications aiming to explore whether the EU's General Data Protection Regulation (GDPR) has held true during a time of crisis and the implications that arose during the COVID-19 outbreak. METHOD AND RESULTS: Based on the approach taken and the screening of the relevant articles, the results focus on three themes: a critique on GDPR; the ethics surrounding the use of digital health technologies, namely in the form of mobile applications; and the possibility of cross border transfers of said data outside of Europe. Within this context, the article reviews the arising themes, considers the use of data through mobile health applications, and discusses whether data protection may require a revision when balancing societal and personal interests. CONCLUSIONS: In summary, although it is clear that the GDPR has been applied through a mixed and complex experience with data handling during the pandemic, the COVID-19 pandemic has indeed shown that it was a test the GDPR was designed and prepared to undertake. The article suggests that further review and research is needed to first ensure that an understanding of the state of the art in data protection during the pandemic is maintained and second to subsequently explore and carefully create a specific framework for the ethical considerations involved. The paper echoes the literature reviewed and calls for the creation of a unified and harmonised network or database to enable the secure data sharing across borders.

Navigating the ethics of remote research data collection.

COVID-19 has accelerated broad trends already in place toward remote research data collection and monitoring. This move implicates novel ethical and regulatory challenges which have not yet received due attention. Existing work is preliminary and does not seek to identify or grapple with the issues in a rigorous and sophisticated way. Here, we provide a framework for identifying and addressing challenges that we believe can help the research community realize the benefits of remote technologies while preserving ethical ideals and public trust. We organize issues into several distinct categories and provide points to consider in a table that can help facilitate ethical design and review of research studies using remote health instruments.

Consumer Views on Health Applications of Consumer Digital Data and Health Privacy Among US Adults: Qualitative Interview Study.

BACKGROUND: In 2020, the number of internet users surpassed 4.6 billion. Individuals who create and share digital data can leave a trail of information about their habits and preferences that collectively generate a digital footprint. Studies have shown that digital footprints can reveal important information regarding an individual's health status, ranging from diet and exercise to depression. Uses of digital applications have accelerated during the COVID-19 pandemic where public health organizations have utilized technology to reduce the burden of transmission, ultimately leading to policy discussions about digital health privacy. Though US consumers report feeling concerned about the way their personal data is used, they continue to use digital technologies. OBJECTIVE: This study aimed to understand the extent to which consumers recognize possible health applications of their digital data and identify their most salient concerns around digital health privacy. METHODS: We conducted semistructured interviews with a diverse national sample of US adults from November 2018 to January 2019. Participants were recruited from the Ipsos KnowledgePanel, a nationally representative panel. Participants were asked to reflect on their own use of digital technology, rate various sources of digital information, and consider several hypothetical scenarios with varying sources and health-related applications of personal digital information. RESULTS: The final cohort included a diverse national sample of 45 US consumers. Participants were generally unaware what consumer digital data might reveal about their health. They also revealed limited knowledge of current data collection and aggregation practices. When responding to specific scenarios with health-related applications of data, they had difficulty weighing the benefits and harms but expressed a desire for privacy protection. They saw benefits in using digital data to improve health, but wanted limits to health programs' use of consumer digital data. CONCLUSIONS: Current privacy restrictions on health-related data are premised on the notion that these data are derived only from medical encounters. Given that an increasing amount of health-related data is derived from digital footprints in consumer settings, our findings suggest the need for greater transparency of data collection and uses, and broader health privacy protections.

'If relevant, yes; if not, no': General practitioner (GP) users and GP perceptions about asking ethnicity questions in Irish general practice: A qualitative analysis using Normalization Process Theory.

CONTEXT: The use of ethnic identifiers in health systems is recommended in several European countries as a means to identify and address heath inequities. There are barriers to implementation that have not been researched. OBJECTIVE: This study examines whether and how ethnicity data can be collected in Irish general practices in a meaningful and acceptable way. METHODS: Qualitative case study data generation was informed by Normalization Process Theory (NPT) constructs about 'sense' making and 'engagement'. It consisted of individual interviews and focus group discussions based on visual participatory techniques. There were 70 informants, including 62 general practitioner (GP) users of diverse ethnic backgrounds recruited through community organisations and eight GPs identified through an inter-agency steering group. Data were analysed according to principles of thematic analysis using NPT. RESULTS: The link between ethnicity and health was often considered relevant because GP users grasped connections with genetic (skin colour, lactose intolerance), geographic (prevalence of disease, early years exposure), behavioural (culture/food) and social determinant (housing) factors. The link was less clear with religion. There was some scepticism and questions about how the collection of data would benefit GP consultations and concerns regarding confidentiality and the actual uses of these data (e.g. risk of discrimination, social control). For GPs, the main theme discussed was relevance: what added value would it bring to their consultations and was it was their role to collect these data? Their biggest concern was about data protection issues in light of the European Union (EU) General Data Protection Regulation (GDPR). The difficulty in explaining a complex concept such as 'ethnicity' in the limited time available in consultations was also worrying. CONCLUSIONS: Implementation of an ethnicity identifier in Irish general practices will require a strong rationale that makes sense to GP users, and specific measures to ensure that its benefits outweigh any potential harm. This is in line with both our participants' views and the EU GDPR.

Paths to social licence for tracking-data analytics in university research and services.

While tracking-data analytics can be a goldmine for institutions and companies, the inherent privacy concerns also form a legal, ethical and social minefield. We present a study that seeks to understand the extent and circumstances under which tracking-data analytics is undertaken with social licence-that is, with broad community acceptance beyond formal compliance with legal requirements. Taking a University campus environment as a case, we enquire about the social licence for Wi-Fi-based tracking-data analytics. Staff and student participants answered a questionnaire presenting hypothetical scenarios involving Wi-Fi tracking for university research and services. Our results present a Bayesian logistic mixed-effects regression of acceptability judgements as a function of participant ratings on 11 privacy dimensions. Results show widespread acceptance of tracking-data analytics on campus and suggest that trust, individual benefit, data sensitivity, risk of harm and institutional respect for privacy are the most predictive factors determining this acceptance judgement.

Human rights, public health and COVID-19 in Canada.

Faced with the extraordinary global public health crisis of COVID-19, governments across Canada must decide, often with limited and imperfect evidence, how to implement measures to reduce its spread. Drawing on a health and human rights framework, this commentary explores several features of the Canadian response to date that raise human rights concerns. Our discussion focuses on criminal law, fines, data collection, and so-called snitch lines. We argue that the approach of governmental and public health authorities must be grounded in the best available scientific evidence and align with human rights standards. Our aim is to encourage dialogue within the public health community in Canada about the importance of human rights-based responses to COVID-19.

RéSUMé: Face à la crise de santé publique sans précédent que représente la COVID-19 à l'échelle mondiale, les gouvernements des provinces et territoires du Canada doivent décider, souvent en se fondant sur des preuves limitées et imparfaites, comment mettre en œuvre des mesures pour réduire sa propagation. En s'appuyant sur un cadre de travail relatif à la santé et aux droits de la personne, cette analyse explore plusieurs éléments de la réponse canadienne apportée à ce jour qui soulèvent des préoccupations en matière de droits de la personne. Notre analyse porte en particulier sur le droit criminel, les amendes, la collecte de données et ce qu'on appelle les « lignes de dénonciation ¼. Nous estimons que l'approche des autorités gouvernementales et de santé publique doit être fondée sur les preuves scientifiques disponibles les plus solides et s'aligner sur les normes en matière de droits de la personne. Nous avons pour objectif d'encourager le dialogue au sein de la communauté du secteur de la santé publique au Canada sur l'importance des réponses à la COVID-19 fondées sur les droits de la personne.

Research Use of Electronic Health Records: Patients' Views on Alternative Approaches to Permission.

Background: The increased use of electronic health records (EHRs) has resulted in new opportunities for research, but also raises concerns regarding privacy, confidentiality, and patient awareness. Because public trust is essential to the success of the research enterprise, patient perspectives are essential to the development and implementation of ethical approaches to the research use of EHRs. Yet, little is known about patients' views and expectations regarding various approaches to seeking permission for research use of their EHR data. Methods: We conducted semi-structured interviews with 120 patients in four counties in diverse regions of the southeastern United States: Appalachia, the Mississippi Delta, and the Piedmont area of North Carolina. We asked participants to consider, from multiple stakeholder perspectives, the advantages and disadvantages of three approaches to notifying patients of, or obtaining permission for, research use of their EHR data; whether they believed it would be acceptable if their healthcare organization used each approach; and which approach would be most appropriate. Results: Nearly all participants said General Notification, Broad Permission, and Categorical Permission would each be acceptable approaches to notification of, or permission for, EHR research. Over half identified Broad Permission as the most appropriate approach. Across all of these discussions, major themes included the importance of clarity, simplicity, and usability of patient-facing materials, as well as the level of transparency, trustworthiness, and respect for patients the approach conveys. Conclusions: Our findings help to inform the development and implementation of ethical approaches to the research use of EHRs by identifying key patient considerations regarding various approaches to permission and suggesting potential actions for healthcare organizations and researchers.

Attitudes and Knowledge of Adolescents in Jordan Regarding the Ethics of Social Media Data Use for Research Purposes.

This study assessed the awareness and attitudes of adolescents in Jordan concerning the ethics of using their social media data for scientific studies. Using an online survey, 393 adolescents were recruited (mean age: 17.2 years ± 1.8). The results showed that 88% of participants were using their real personal information on social media sites, with males more likely to provide their information than females. More than two thirds of participants (72.5%) were aware that researchers may use their data for research purposes, with the majority believing that informed consent must be obtained from both the adolescents and their parents. However, more than three quarters of those surveyed (76%) did not trust the results of research that depended on collecting data from social media. These findings suggest that adolescents in Jordan understood most of the ethical aspects related to the utilization of their data from social media websites for research studies.

Linking Survey and Twitter Data: Informed Consent, Disclosure, Security, and Archiving.

Linked survey and Twitter data present an unprecedented opportunity for social scientific analysis, but the ethical implications for such work are complex-requiring a deeper understanding of the nature and composition of Twitter data to fully appreciate the risks of disclosure and harm to participants. In this article, we draw on our experience of three recent linked data studies, briefly discussing the background research on data linkage and the complications around ensuring informed consent. Particular attention is paid to the vast array of data available from Twitter and in what manner it might be disclosive. In light of this, the issues of maintaining security, minimizing risk, archiving, and reuse are applied to linked Twitter and survey data. In conclusion, we reflect on how our ability to collect and work with Twitter data has outpaced our technical understandings of how the data are constituted and observe that understanding one's data is an essential prerequisite for ensuring best ethical practice.

The Issue of "Context": Data, Culture, and Commercial Context in Social Media Ethics.

One of the central concerns in research ethics in recent years has been the vast amount of data available from social media platforms and the related concerns around what establishes an ethical use of data. Toward addressing these challenges, researchers have therefore called for the consideration of "context" in Internet research. However, context remains a fuzzy concept and little guidance exists on its different dimensions. In response to this issue, this article uses worked examples from three data sets to discuss three different dimensions of "context": data context, cultural context, and commercial context. The article problematizes these dimensions and offers suggestions toward creating ethical sensibility to these by drawing on two data sets from 2017: (a) climate change imagery scraped from five social platforms and (b) digital-ethnographic work at the climate summit COP23.