The known challenge of underutilization of data and biological material from biorepositories as potential resources for medical research has been the focus of discussion for over a decade. Recently developed guidelines for improved data availability and reusability—entitled FAIR Principles (Findability, Accessibility, Interoperability, and Reusability)—are likely to address only parts of the problem. In this article, we argue that biological material and data should be viewed as a unified resource. This approach would facilitate access to complete provenance information, which is a prerequisite for reproducibility and meaningful integration of the data. A unified view also allows for optimization of long-term storage strategies, as demonstrated in the case of biobanks. We propose an extension of the FAIR Principles to include the following additional components: (1) quality aspects related to research reproducibility and meaningful reuse of the data, (2) incentives to stimulate effective enrichment of data sets and biological material collections and its reuse on all levels, and (3) privacy-respecting approaches for working with the human material and data. These FAIR-Health principles should then be applied to both the biological material and data. We also propose the development of common guidelines for cloud architectures, due to the unprecedented growth of volume and breadth of medical data generation, as well as the associated need to process the data efficiently.

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K-anonymization is an important technique for the de-identification of sensitive datasets. In this paper, we briefly describe an implementation framework which has been carefully engineered to meet the needs of an important class of k-anonymity algorithms. We have implemented and evaluated two major well-known algorithms within this framework and show that it allows for highly efficient implementations. Regarding their runtime behaviour, we were able to closely reproduce the results from previous publications but also found some algorithmic limitations. Furthermore, we propose a new algorithm that achieves very good performance by implementing a novel strategy and exploiting different aspects of our implementation framework. In contrast to the current state-of-the-art, our algorithm offers algorithmic stability, with execution time being independent of the actual representation of the input data. Experiments with different real-world datasets show that our solution clearly outperforms the previous algorithms

The Lean European Open Survey on SARS-CoV-2 Infected Patients (LEOSS) is a European registry for studying the epidemiology and clinical course of COVID-19. To support evidence-generation at the rapid pace required in a pandemic, LEOSS follows an Open Science approach, making data available to the public in real-time. To protect patient privacy, quantitative anonymization procedures are used to protect the continuously published data stream consisting of 16 variables on the course and therapy of COVID-19 from singling out, inference and linkage attacks. We investigated the bias introduced by this process and found that it has very little impact on the quality of output data. Current laws do not specify requirements for the application of formal anonymization methods, there is a lack of guidelines with clear recommendations and few real-world applications of quantitative anonymization procedures have been described in the literature. We therefore believe that our work can help others with developing urgently needed anonymization pipelines for their projects.

BackgroundPrivacy must be protected when sensitive biomedical data is shared, e.g. for research purposes. Data de-identification is an important safeguard, where datasets are transformed to meet two conflicting objectives: minimizing re-identification risks while maximizing data quality. Typically, de-identification methods search a solution space of possible data transformations to find a good solution to a given de-identification problem. In this process, parts of the search space must be excluded to maintain scalability.ObjectivesThe set of transformations which are solution candidates is typically narrowed down by storing the results obtained during the search process and then using them to predict properties of the output of other transformations in terms of privacy (first objective) and data quality (second objective). However, due to the exponential growth of the size of the search space, previous implementations of this method are not well-suited when datasets contain many attributes which need to be protected. As this is often the case with biomedical research data, e.g. as a result of longitudinal collection, we have developed a novel method.MethodsOur approach combines the mathematical concept of antichains with a data structure inspired by prefix trees to represent properties of a large number of data transformations while requiring only a minimal amount of information to be stored. To analyze the improvements which can be achieved by adopting our method, we have integrated it into an existing algorithm and we have also implemented a simple best-first branch and bound search (BFS) algorithm as a first step towards methods which fully exploit our approach. We have evaluated these implementations with several real-world datasets and the k-anonymity privacy model.ResultsWhen integrated into existing de-identification algorithms for low-dimensional data, our approach reduced memory requirements by up to one order of magnitude and execution times by up to 25 %. This allowed us to increase the size of solution spaces which could be processed by almost a factor of 10. When using the simple BFS method, we were able to further increase the size of the solution space by a factor of three. When used as a heuristic strategy for high-dimensional data, the BFS approach outperformed a state-of-the-art algorithm by up to 12 % in terms of the quality of output data.ConclusionsThis work shows that implementing methods of data de-identification for real-world applications is a challenging task. Our approach solves a problem often faced by data custodians: a lack of scalability of de-identification software when used with datasets having realistic schemas and volumes. The method described in this article has been implemented into ARX, an open source de-identification software for biomedical data.