Re‐identifiability of genomic data and the
            <scp>GDPR</scp>

Shabani, Mahsa; Marelli, Luca

doi:10.15252/embr.201948316

Cited by 58 publications

(37 citation statements)

References 9 publications

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“…Moreover, the definition of "anonymous data" advanced by the GDPR seems to create a "catch-22" situation (Shabani and Marelli 2019). On the one hand, as we have seen, the processing of anonymous data is not subjected to the safeguards entailed by the GDPR, and this represents an implicit incentive to the processing and sharing of anonymous information.…”

Section: Pseudonymization and Anonymization Of Sensitive Datamentioning

confidence: 99%

“…On the other hand, however, precisely the absence of said safeguards, as well as the enhanced circulation of data, are factors that, in themselves, are bound to increase the likelihood of reidentification of the data subject, which, in turn, can lead to the de-anonymization of the dataset. Thus, the very approach toward anonymous data processing adopted by the GDPR can be said to set a high legal bar for achieving anonymization of data (Quinn and Quinn 2018)-especially in the context of the processing of genetic data (Shabani and Marelli 2019).…”

Section: Pseudonymization and Anonymization Of Sensitive Datamentioning

confidence: 99%

See 1 more Smart Citation

P5 eHealth: An Agenda for the Health Technologies of the Future

Pravettoni¹,

Triberti²

2020

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Section: Pseudonymization and Anonymization Of Sensitive Datamentioning

confidence: 99%

Section: Pseudonymization and Anonymization Of Sensitive Datamentioning

confidence: 99%

P5 eHealth: An Agenda for the Health Technologies of the Future

Pravettoni¹,

Triberti²

2020

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“…DNA sequencing reads) can be downloaded or viewed by the data user/processor. All data must be stripped of any information that could lead to identification, either directly or indirectly-for instance, by combining data with other available information, such as genealogy databases 20 . However, at this point in time, the consent mechanisms as well as the process of removing private or confidential information from raw data remains with the data custodian, for example the hospital that uploads the COVID-19related sequences.…”

Section: Patient Privacymentioning

confidence: 99%

A global omics data sharing and analytics marketplace: Case study of a rapid data COVID-19 pandemic response platform

Farah

Lalli

Baker

et al. 2020

Preprint

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Under public health emergencies, particularly an early epidemic, it is fundamental that genetic and other healthcare data is shared across borders in both a timely and accurate manner before the outbreak of a global pandemic. However, although the COVID-19 pandemic has created a tidal wave of data, most patient data is siloed, not easily accessible, and due to low sample size, largely not actionable. Based on the precision medicine platform Shivom, a novel and secure data sharing and data analytics marketplace, we developed a versatile pandemic preparedness platform that allows healthcare professionals to rapidly share and analyze genetic data. The platform solves several problems of the global medical and research community, such as siloed data, cross-border data sharing, lack of state-of-the-art analytic tools, GDPR-compliance, and ease-of-use. The platform serves as a central marketplace of 'discoverability'. The platform combines patient genomic & omics data sets, a marketplace for AI & bioinformatics algorithms, new diagnostic tools, and data-sharing capabilities to advance virus epidemiology and biomarker discovery. The bioinformatics marketplace contains some preinstalled COVID-19 pipelines to analyze virus- and host genomes without the need for bioinformatics expertise. The platform will be the quickest way to rapidly gain insight into the association between virus-host interactions and COVID-19 in various populations which can have a significant impact on managing the current pandemic and potential future disease outbreaks.

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“…(2) "archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89 (1)" 28 can be considered as two main grounds for their processing which cover the vast majority of cases. Comparing these provisions with the corresponding Article 8 of Directive 95/46/EC, it is noticeable that the list of legal grounds for the processing of special categories of data has been significantly broadened and supplemented, inter alia, by the aforementioned subparagraph on scientific research purposes relating directly to genetic data.…”

Section: Additional Guarantees Regarding Sensitive Datamentioning

confidence: 99%

Processing of Genetic Data under GDPR: Unresolved Conflict of Interests

Sukhorolskyi

Hutsaliuk

2020

MUJLT

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Over the last decades, developments in the fields of genetics and bioinformatics caused a marked increase in the processing of human genetic data by various companies and institutions. This results in the adoption of several international documents and the emergence of legal norms on the protection of genetic data. The paper examines how and to what extent the interests and rights of the data subject with regard to the processing of genetic data are protected in the European Union. It is concluded that under the GDPR this task is implemented through classifying genetic data as sensitive, reliance on anonymisation and pseudonymisation, as well as introduction of the procedure of data protection impact assessment. Nevertheless, given the unique characteristics of genetic data distinguishing them from other categories of personal data, these measures cannot be regarded as sufficient and effective. The paper argues that current EU data protection legislation creates favourable conditions for genetic research, thereby ensuring particular public interests, but does not establish a special regime for genetic data processing appropriate to potential threats in this field and risks to the rights of data subjects.

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Re‐identifiability of genomic data and the GDPR

Abstract: The EU Data Protection Regulation has wide‐ranging implications for research based on anonymized personal genomic and genetic data given the realistic risk of re‐identification.

Cited by 58 publications

References 9 publications

P5 eHealth: An Agenda for the Health Technologies of the Future

P5 eHealth: An Agenda for the Health Technologies of the Future

A global omics data sharing and analytics marketplace: Case study of a rapid data COVID-19 pandemic response platform

Processing of Genetic Data under GDPR: Unresolved Conflict of Interests

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