Nordic Permed Law is seeking original research contributions for a symposium on health and genetic data law in Europe, which will result in an edited volume on the topic (publisher: TBC).
This symposium as well as the edited collection is organized by Santa Slokenberga, Katharina Ó Cathaoir and Mahsa Shabani on behalf of the Nordic Permed Law.
NB! We have extended the deadlines. Read more about the submission process below.
Health and genetic data are at the center of an individual’s privacy. The designation of these data as a special category of personal data by lawmakers signifies the acknowledgment of their sensitivity and importance for the individual. At the same time, these data are often considered to be a valuable resource, both, for the individual and the society at large. The hope is that not only can the individuals benefit from better care, but the data can also be used for medical needs, public health purposes, scientific research, innovation, and development, to name a few. Moreover, these data are a means for the European Union and its Member States to achieve different policy aspirations, including building the European Health Union, enhancing the EU’s competitiveness in life sciences, and achieving digital transformation.
In the last years, Europe has already witnessed and will continue to witness the transformation of health and genetic data governance. In addition to the General Data Protection Regulation and the revised Council of Europe Convention 108, the field is being complemented with several other frameworks, including the Data Governance Act and the European Health Data Space. The creation of preconditions for achieving the ambitious policy aspirations has an unavoidable bearing on such questions as privacy; data protection as a fundamental right; the conceptualization of legitimate interests in claiming access to one’s data, on crafting strategies, compensatory measures, as well as administrative and compliance solutions and structures for enabling the mechanisms to function.
This symposium and the edited volume seek to place the transformations of the legal, governance, and administrative aspects of health and genetic data protection in focus. They take a European perspective and examine the changes, opportunities, and challenges that the transformations in the European regulatory arena bring for health and genetic data.
We welcome submissions on the legal, regulatory and administrative transformations relating to health and genetic data, including but not limited to topics falling within the following domains:
Opportunities and challenges brought by the introduction, implementation and use of electronic health records
Questions pertaining to the primary use of electronic health records
Cross border healthcare: access to and sharing of health data across borders for treatment purposes.
Collection of data through mHealth applications and wearables for primary and secondary uses purposes
The interplay of private and public interests in health and genetic data access
Personal and non-personal health and genetic data and concerns of identifiability, synthetic data, federated structures and remote access
Challenges attributed to health and genetic data in specific healthcare, research or innovation & development contexts, e.g., AI development, biobanking, medicinal product and medical device development
Enhanced sharing and collaboration within the EU, third countries and international organizations in healthcare, research or public health and social care
Regime interaction in governing health and genetic data in healthcare, research or public health and social care
Extraterritorial impacts and jurisdictional limitations
Complex synergies of health and genetic data regulation with ethics
Administration of data and healthcare, public health, social care or scientific research
Compliance and sanctions with the applicable requirements
We encourage submissions from both established and early-career legal scholars. Interested authors should provide an abstract of no more than 300 words in Word format and provide the following information: first name/surname, affiliation, the title of the proposed contribution, and email address of the corresponding author.
The symposium will be held digitally in June 2023.
Please email your abstract by 15 November 2022 to firstname.lastname@example.org.
Candidates will be notified 15 December 2022 about the editors’ decision. If the proposal is accepted, the draft manuscript must be circulated among the participants of the symposium by 1 May 2023 and the full chapter must be submitted by 30 September 2023. The final deadline could be extended if legislative developments in the field require that.
Manuscripts should not exceed 10,000 words including footnotes and use the OSCOLA reference system.
Associate Professor at Centre for Legal Studies in Welfare and Market, University of Copenhagen