They who must not be identified—distinguishing personal from non-personal data under the GDPR

Finck, Michèle; Pallas, Frank

doi:10.1093/idpl/ipz026

Cited by 97 publications

(70 citation statements)

References 0 publications

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“…The difficulty in holding personal data separate from de-identified data may have been because the distinction was not clear in the mind of participants and the short videos shown to participants may have been insufficient to facilitate deeper understandings. However, it also reflects ongoing academic, regulatory and technical debate about the conceptual boundaries of personal and non-personal data, as well as methods of identification, de-identification and re-identification, and the persistent confusion between these terms [44][45][46].…”

Section: Discussionmentioning

confidence: 99%

“Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore

et al. 2020

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Background We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine (PM) and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research. Methods We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages (English, Mandarin and Malay) and analysed with qualitative content and thematic analysis. Results Four key themes emerged: nuanced understandings of data security and data sensitivity; trade-offs between data protection and research benefits; trust (and distrust) in the public and private sectors; and governance and control options. Participants were aware of the inherent risks associated with data sharing for research. Participants expressed conditional support for data sharing, including genomic sequence data and information contained within electronic medical records. This support included sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Support was conditional on the perceived social value of the research and appropriate de-identification and data security processes. Participants suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore. Conclusion Maintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research. Contrary to themes in much prior research, participants demonstrated a sophisticated understanding of the inherent risks of data sharing, analysed trade-offs between risks and potential benefits of PM, and often adopted an international perspective.

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Section: Discussionmentioning

confidence: 99%

“Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore

et al. 2020

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“…The first is an absolute approach, where anonymized data constitute personal data if there is even a theoretical chance of reidentification. This approach represents the state of national law in a minority of EU member states, such as France [ 51 ]. The second is the relative approach, where anonymized data are no longer personal data if it is reasonably likely that methods do not exist to reidentify individuals [ 50 ].…”

Section: Regulatory Hurdles For the Use Of Encryption Technologiesmentioning

confidence: 99%

Revolutionizing Medical Data Sharing Using Advanced Privacy-Enhancing Technologies: Technical, Legal, and Ethical Synthesis

Scheibner¹,

Raisaro²,

Troncoso-Pastoriza³

et al. 2021

J Med Internet Res

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Multisite medical data sharing is critical in modern clinical practice and medical research. The challenge is to conduct data sharing that preserves individual privacy and data utility. The shortcomings of traditional privacy-enhancing technologies mean that institutions rely upon bespoke data sharing contracts. The lengthy process and administration induced by these contracts increases the inefficiency of data sharing and may disincentivize important clinical treatment and medical research. This paper provides a synthesis between 2 novel advanced privacy-enhancing technologies—homomorphic encryption and secure multiparty computation (defined together as multiparty homomorphic encryption). These privacy-enhancing technologies provide a mathematical guarantee of privacy, with multiparty homomorphic encryption providing a performance advantage over separately using homomorphic encryption or secure multiparty computation. We argue multiparty homomorphic encryption fulfills legal requirements for medical data sharing under the European Union’s General Data Protection Regulation which has set a global benchmark for data protection. Specifically, the data processed and shared using multiparty homomorphic encryption can be considered anonymized data. We explain how multiparty homomorphic encryption can reduce the reliance upon customized contractual measures between institutions. The proposed approach can accelerate the pace of medical research while offering additional incentives for health care and research institutes to employ common data interoperability standards.

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“…However, it also reflects ongoing academic, regulatory and technical debate about the conceptual boundaries of personal and non-personal data, as well as methods of identification, de-identification and reidentification. 41 Participants did not expect a guarantee of anonymity or data security and they were willing to accept some risks in order to gain the potential benefits of PM. Participants were most motived to accept these inherent risks for research aimed at producing public benefit.…”

Section: Discussionmentioning

confidence: 99%

"Who is Watching the Watchdog?": Ethical Perspectives of Sharing Health-related Data for Precision Medicine in Singapore

Lysaght

Ballantyne

Xafis

et al. 2020

Preprint

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Background: We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine (PM) and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research. Methods: We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages (English, Mandarin and Malay) and analysed with qualitative content and thematic analysis. Results: Four key themes emerged: nuanced understandings of data security and data sensitivity; trades-offs between data protection and research benefits; trust (and distrust) in the public and private sectors; and governance and control options. Participants were aware of the inherent risks associated with data sharing for research. Participants expressed conditional support for data sharing, including genomic sequence data and information contained within electronic medical records. This support included sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Support was conditional on the perceived social value of the research and appropriate de-identification and data security processes. Participants suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore. Conclusion: Maintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research. Contrary to themes in much prior research, participants demonstrated a sophisticated understanding of the inherent risks of data sharing, analysed trade-offs between risks and potential benefits of PM, and often adopted an international perspective.

show abstract

They who must not be identified—distinguishing personal from non-personal data under the GDPR

Cited by 97 publications

References 0 publications

“Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore

“Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore

Revolutionizing Medical Data Sharing Using Advanced Privacy-Enhancing Technologies: Technical, Legal, and Ethical Synthesis

"Who is Watching the Watchdog?": Ethical Perspectives of Sharing Health-related Data for Precision Medicine in Singapore

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