EU GDPR or APEC CBPR? A comparative analysis of the approach of the EU and APEC to cross border data transfers and protection of personal data in the IoT era

Sullivan, Clare

doi:10.1016/j.clsr.2019.05.004

Cited by 28 publications

(19 citation statements)

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“…Indeed, “certified companies and governments are working together to ensure that when personal information moves across borders, it is protected in accordance with the standards prescribed by the system's program requirements and is enforceable across participating jurisdictions” 7 . Such an approach allows a leveling-up of data protection requirements across participating organizations, while ensuring that the local legislation within which these companies are operating is respected ( 48 , 49 ). The GDPR also proposes the implementation of data protection certifications under a voluntary basis (see Art.…”

Section: Discussionmentioning

confidence: 99%

Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders

Geneviève

Martani

Perneger

et al. 2021

Front. Public Health

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Introduction: Health research is gradually embracing a more collectivist approach, fueled by a new movement of open science, data sharing and collaborative partnerships. However, the existence of systemic contradictions hinders the sharing of health data and such collectivist endeavor. Therefore, this qualitative study explores these systemic barriers to a fair sharing of health data from the perspectives of Swiss stakeholders.Methods: Purposive and snowball sampling were used to recruit 48 experts active in the Swiss healthcare domain, from the research/policy-making field and those having a high position in a health data enterprise (e.g., health register, hospital IT data infrastructure or a national health data initiative). Semi-structured interviews were then conducted, audio-recorded, verbatim transcribed with identifying information removed to guarantee the anonymity of participants. A theoretical thematic analysis was then carried out to identify themes and subthemes related to the topic of systemic fairness for sharing health data.Results: Two themes related to the topic of systemic fairness for sharing health data were identified, namely (i) the hypercompetitive environment and (ii) the legal uncertainty blocking data sharing. The theme, hypercompetitive environment was further divided into two subthemes, (i) systemic contradictions to fair data sharing and the (ii) need of fair systemic attribution mechanisms.Discussion: From the perspectives of Swiss stakeholders, hypercompetition in the Swiss academic system is hindering the sharing of health data for secondary research purposes, with the downside effect of influencing researchers to embrace individualism for career opportunities, thereby opposing the data sharing movement. In addition, there was a perceived sense of legal uncertainty from legislations governing the sharing of health data, which adds unreasonable burdens on individual researchers, who are often unequipped to deal with such facets of their data sharing activities.

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Section: Discussionmentioning

confidence: 99%

Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders

Geneviève

Martani

Perneger

et al. 2021

Front. Public Health

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“…This was non-binding and in and around that time period, many countries around the world adopted data protection laws based on its Information Privacy Principles. The APEC Cross Border Privacy Rules system (CBPR) has broad areas of similarity with the current GDPR, but whereas the GDPR is based on the individual's fundamental right to data protection and privacy within a union in which data is freely-flowing, the APEC CBPR focuses on facilitating data transfers across borders within the context of its defined data protection parameters [52].…”

Section: Definitionmentioning

confidence: 99%

Developments in Privacy and Data Ownership in Mobile Health Technologies, 2016-2019

Galvin

DeMuro²

2020

Yearb Med Inform

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Objectives: To survey international regulatory frameworks that serve to protect privacy of personal data as a human right as well as to review the literature regarding privacy protections and data ownership in mobile health (mHealth) technologies between January 1, 2016 and June 1, 2019 in order to identify common themes. Methods: We performed a review of relevant literature available in English published between January 1, 2016 and June 1, 2019 from databases including PubMed, Google Scholar, and Web of Science, as well as relevant legislative background material. Articles out of scope (as detailed below) were eliminated. We categorized the remaining pool of articles and discrete themes were identified, specifically: concerns around data transmission and storage, including data ownership and the ability to re-identify previously de-identified data; issues with user consent (including the availability of appropriate privacy policies) and access control; and the changing culture and variable global attitudes toward privacy of health data. Results: Recent literature demonstrates that the security of mHealth data storage and transmission remains of wide concern, and aggregated data that were previously considered “de-identified” have now been demonstrated to be re-identifiable. Consumer-informed consent may be lacking with regard to mHealth applications due to the absence of a privacy policy and/or to text that is too complex and lengthy for most users to comprehend. The literature surveyed emphasizes improved access control strategies. This survey also illustrates a wide variety of global user perceptions regarding health data privacy. Conclusion: The international regulatory framework that serves to protect privacy of personal data as a human right is diverse. Given the challenges legislators face to keep up with rapidly advancing technology, we introduce the concept of a “healthcare fiduciary” to serve the best interest of data subjects in the current environment.

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“…The concept of human rights is limited to individuals, which keeps most HyR stakeholder rights, such as natural environments, smart devices, organisations and regulators, unaddressed. Though some regulators are providing protective regulative frameworks (Sullivan, 2019), these are proved to be ineffective without public awareness and empowerment.…”

Section: Hybrid Realitymentioning

confidence: 99%

Hybrid reality development - can social responsibility concepts provide guidance?

Perko

2020

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Purpose This paper aims to define hybrid reality (HyR) as an ongoing process in which artificial intelligence (AI) technology is gradually introduced as an active stakeholder by using reasoning to execute real-life activities. Also, to examine the implications of social responsibility (SR) concepts as featured in the HyR underlying common framework to progress towards the redefinition of global society. Design/methodology/approach A combination of systemic tools is used to examine and assess the development of HyR. The research is based on evolutionary and learning concepts, leading to the new meta-system development. It also builds upon the viable system model and AI, invoking SR as a conceptual framework. The research is conducted by using a new approach: using system dynamics based interactions modelling, the following two models have been proposed. The state-of-the-art HyR interactions model, examined using SR concepts; and a SR concept-based HyR model, examined using a smart vehicle case. Findings In the HyR model, interaction asymmetry between stakeholders is identified, possibly leading to pathological behaviour and AI technology learning corruption. To resolve these asymmetry issues, an interaction model based on SR concepts is proposed and examined on the example of an autonomous vehicle transport service. The examination results display significant changes in the conceptual understanding of transport services, their utilisation and data-sharing concepts. Research limitations/implications As the research proposal is theoretical in nature, the projection may not display a fully holistic perspective and can/should be complemented with empirical research results. Practical implications For researchers, HyR provides a new paradigm and can thereby articulate potential research frameworks. HyR designers can recognise projected development paths and the resources required for the implication of SR concepts. Individuals and organisations should be aware of their not necessarily passive role in HyR and can therefore use the necessary social force to activate their status. Originality/value For the first time, to the best of the author’s knowledge, the term HyR is openly elaborated and systemically examined by invoking concepts of SR. The proposed model provides an overview of the current and potential states of HyR and examines the gap between them.

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EU GDPR or APEC CBPR? A comparative analysis of the approach of the EU and APEC to cross border data transfers and protection of personal data in the IoT era

Cited by 28 publications

References 0 publications

Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders

Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders

Developments in Privacy and Data Ownership in Mobile Health Technologies, 2016-2019

Hybrid reality development - can social responsibility concepts provide guidance?

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