Dwarna : a blockchain solution for dynamic consent in biobanking

Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna—a web portal for ‘dynamic consent’ that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners’ consent in a blockchain to create an immutable audit trail of research partners’ consent changes. Dwarna’s structure also presents a solution to the European Union’s General Data Protection Regulation’s right to erasure—a right that is seemingly incompatible with the blockchain model. Dwarna’s transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.peer-reviewe

Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

Health-related data analysis plays an important role in self-knowledge, disease prevention, diagnosis, and quality of life assessment. With the advent of data-driven solutions, a myriad of apps and Internet of Things (IoT) devices (wearables, home-medical sensors, etc) facilitates data collection and provide cloud storage with a central administration. More recently, blockchain and other distributed ledgers became available as alternative storage options based on decentralised organisation systems. We bring attention to the human data bleeding problem and argue that neither centralised nor decentralised system organisations are a magic bullet for data-driven innovation if individual, community and societal values are ignored. The motivation for this position paper is to elaborate on strategies to protect privacy as well as to encourage data sharing and support open data without requiring a complex access protocol for researchers. Our main contribution is to outline the design of a self-regulated Open Health Archive (OHA) system with focus on quality of life (QoL) data.Comment: DSS 2018: Data-Driven Self-Regulating System

Blockchain For Food: Making Sense of Technology and the Impact on Biofortified Seeds

The global food system is under pressure and is in the early stages of a major transition towards more transparency, circularity, and personalisation. In the coming decades, there is an increasing need for more food production with fewer resources. Thus, increasing crop yields and nutritional value per crop is arguably an important factor in this global food transition. Biofortification can play an important role in feeding the world. Biofortified seeds create produce with increased nutritional values, mainly minerals and vitamins, while using the same or less resources as non-biofortified variants. However, a farmer cannot distinguish a biofortified seed from a regular seed. Due to the invisible nature of the enhanced seeds, counterfeit products are common, limiting wide-scale adoption of biofortified crops. Fraudulent seeds pose a major obstacle in the adoption of biofortified crops. A system that could guarantee the origin of the biofortified seeds is therefore required to ensure widespread adoption. This trust-ensuring immutable proof for the biofortified seeds, can be provided via blockchain technology

Blockchains' federation: Developing Personal Health Trajectory-centered health systems

The current world is a globalized and connected one. Even without moving around, a person interacts with personnel from different institutions treating him as a patient in their daily life. Each of these institutions keeps their patients' data stored in their own information system, in an isolated way. Due to this, each patient has their data scattered among all these institutions and services with which she interacts along her life. This can complicate the take of the proper decision when the patient is under treatment. To solve this situation, new patient-centered health systems have been proposed as a replacement to the actual institution-centered ones, storing all health information of a patient into a unique global vision. However, some questions have arisen around the actual proposals, as who should store and maintain this vision of a given patient, and how should this information be made available for other systems. The proposal presented in this paper advocate for the achievement of a Personal Health Trajectory that can be useful both for patients and health professionals, using the concept of blockchains' federation. The proposal has been validated using 5689 records from 50 different institutions, belonging to 1156 actors

A Blockchain-based Approach for Data Accountability and Provenance Tracking

The recent approval of the General Data Protection Regulation (GDPR) imposes new data protection requirements on data controllers and processors with respect to the processing of European Union (EU) residents' data. These requirements consist of a single set of rules that have binding legal status and should be enforced in all EU member states. In light of these requirements, we propose in this paper the use of a blockchain-based approach to support data accountability and provenance tracking. Our approach relies on the use of publicly auditable contracts deployed in a blockchain that increase the transparency with respect to the access and usage of data. We identify and discuss three different models for our approach with different granularity and scalability requirements where contracts can be used to encode data usage policies and provenance tracking information in a privacy-friendly way. From these three models we designed, implemented, and evaluated a model where contracts are deployed by data subjects for each data controller, and a model where subjects join contracts deployed by data controllers in case they accept the data handling conditions. Our implementations show in practice the feasibility and limitations of contracts for the purposes identified in this paper