Privacy in the Genomic Era

Genome sequencing technology has advanced at a rapid pace and it is now possible to generate highly-detailed genotypes inexpensively. The collection and analysis of such data has the potential to support various applications, including personalized medical services. While the benefits of the genomics revolution are trumpeted by the biomedical community, the increased availability of such data has major implications for personal privacy; notably because the genome has certain essential features, which include (but are not limited to) (i) an association with traits and certain diseases, (ii) identification capability (e.g., forensics), and (iii) revelation of family relationships. Moreover, direct-to-consumer DNA testing increases the likelihood that genome data will be made available in less regulated environments, such as the Internet and for-profit companies. The problem of genome data privacy thus resides at the crossroads of computer science, medicine, and public policy. While the computer scientists have addressed data privacy for various data types, there has been less attention dedicated to genomic data. Thus, the goal of this paper is to provide a systematization of knowledge for the computer science community. In doing so, we address some of the (sometimes erroneous) beliefs of this field and we report on a survey we conducted about genome data privacy with biomedical specialists. Then, after characterizing the genome privacy problem, we review the state-of-the-art regarding privacy attacks on genomic data and strategies for mitigating such attacks, as well as contextualizing these attacks from the perspective of medicine and public policy. This paper concludes with an enumeration of the challenges for genome data privacy and presents a framework to systematize the analysis of threats and the design of countermeasures as the field moves forward

Systematizing Genome Privacy Research: A Privacy-Enhancing Technologies Perspective

Rapid advances in human genomics are enabling researchers to gain a better understanding of the role of the genome in our health and well-being, stimulating hope for more effective and cost efficient healthcare. However, this also prompts a number of security and privacy concerns stemming from the distinctive characteristics of genomic data. To address them, a new research community has emerged and produced a large number of publications and initiatives. In this paper, we rely on a structured methodology to contextualize and provide a critical analysis of the current knowledge on privacy-enhancing technologies used for testing, storing, and sharing genomic data, using a representative sample of the work published in the past decade. We identify and discuss limitations, technical challenges, and issues faced by the community, focusing in particular on those that are inherently tied to the nature of the problem and are harder for the community alone to address. Finally, we report on the importance and difficulty of the identified challenges based on an online survey of genome data privacy expertsComment: To appear in the Proceedings on Privacy Enhancing Technologies (PoPETs), Vol. 2019, Issue

Fog Computing in Medical Internet-of-Things: Architecture, Implementation, and Applications

In the era when the market segment of Internet of Things (IoT) tops the chart in various business reports, it is apparently envisioned that the field of medicine expects to gain a large benefit from the explosion of wearables and internet-connected sensors that surround us to acquire and communicate unprecedented data on symptoms, medication, food intake, and daily-life activities impacting one's health and wellness. However, IoT-driven healthcare would have to overcome many barriers, such as: 1) There is an increasing demand for data storage on cloud servers where the analysis of the medical big data becomes increasingly complex, 2) The data, when communicated, are vulnerable to security and privacy issues, 3) The communication of the continuously collected data is not only costly but also energy hungry, 4) Operating and maintaining the sensors directly from the cloud servers are non-trial tasks. This book chapter defined Fog Computing in the context of medical IoT. Conceptually, Fog Computing is a service-oriented intermediate layer in IoT, providing the interfaces between the sensors and cloud servers for facilitating connectivity, data transfer, and queryable local database. The centerpiece of Fog computing is a low-power, intelligent, wireless, embedded computing node that carries out signal conditioning and data analytics on raw data collected from wearables or other medical sensors and offers efficient means to serve telehealth interventions. We implemented and tested an fog computing system using the Intel Edison and Raspberry Pi that allows acquisition, computing, storage and communication of the various medical data such as pathological speech data of individuals with speech disorders, Phonocardiogram (PCG) signal for heart rate estimation, and Electrocardiogram (ECG)-based Q, R, S detection.Comment: 29 pages, 30 figures, 5 tables. Keywords: Big Data, Body Area Network, Body Sensor Network, Edge Computing, Fog Computing, Medical Cyberphysical Systems, Medical Internet-of-Things, Telecare, Tele-treatment, Wearable Devices, Chapter in Handbook of Large-Scale Distributed Computing in Smart Healthcare (2017), Springe

Biopiracy <i>versus </i>one-world medicine – from colonial relicts to global collaborative concepts

Background: Practices of biopiracy to use genetic resources and indigenous knowledge by Western companies without benefit-sharing of those, who generated the traditional knowledge, can be understood as form of neocolonialism.Hypothesis: : The One-World Medicine concept attempts to merge the best of traditional medicine from developing countries and conventional Western medicine for the sake of patients around the globe.Study design: Based on literature searches in several databases, a concept paper has been written. Legislative initiatives of the United Nations culminated in the Nagoya protocol aim to protect traditional knowledge and regulate benefit-sharing with indigenous communities. The European community adopted the Nagoya protocol, and the corresponding regulations will be implemented into national legislation among the member states. Despite pleasing progress, infrastructural problems of the health care systems in developing countries still remain. Current approaches to secure primary health care offer only fragmentary solutions at best. Conventional medicine from industrialized countries cannot be afforded by the impoverished population in the Third World. Confronted with exploding costs, even health systems in Western countries are endangered to burst. Complementary and alternative medicine (CAM) is popular among the general public in industrialized countries, although the efficacy is not sufficiently proven according to the standards of evidence-based medicine. CAM is often available without prescription as over-the-counter products with non-calculated risks concerning erroneous self-medication and safety/toxicity issues. The concept of integrative medicine attempts to combine holistic CAM approaches with evidence-based principles of conventional medicine.Conclusion: To realize the concept of One-World Medicine, a number of standards have to be set to assure safety, efficacy and applicability of traditional medicine, e.g. sustainable production and quality control of herbal products, performance of placebo-controlled, double-blind, randomized clinical trials, phytovigilance, as well as education of health professionals and patients

Combining mobile-health (mHealth) and artificial intelligence (AI) methods to avoid suicide attempts: the Smartcrises study protocol

The screening of digital footprint for clinical purposes relies on the capacity of wearable technologies to collect data and extract relevant information’s for patient management. Artificial intelligence (AI) techniques allow processing of real-time observational information and continuously learning from data to build understanding. We designed a system able to get clinical sense from digital footprints based on the smartphone’s native sensors and advanced machine learning and signal processing techniques in order to identify suicide risk. Method/design: The Smartcrisis study is a cross-national comparative study. The study goal is to determine the relationship between suicide risk and changes in sleep quality and disturbed appetite. Outpatients from the Hospital Fundación Jiménez Díaz Psychiatry Department (Madrid, Spain) and the University Hospital of Nimes (France) will be proposed to participate to the study. Two smartphone applications and a wearable armband will be used to capture the data. In the intervention group, a smartphone application (MEmind) will allow for the ecological momentary assessment (EMA) data capture related with sleep, appetite and suicide ideations. Discussion: Some concerns regarding data security might be raised. Our system complies with the highest level of security regarding patients’ data. Several important ethical considerations related to EMA method must also be considered. EMA methods entails a non-negligible time commitment on behalf of the participants. EMA rely on daily, or sometimes more frequent, Smartphone notifications. Furthermore, recording participants’ daily experiences in a continuous manner is an integral part of EMA. This approach may be significantly more than asking a participant to complete a retrospective questionnaire but also more accurate in terms of symptoms monitoring. Overall, we believe that Smartcrises could participate to a paradigm shift from the traditional identification of risks factors to personalized prevention strategies tailored to characteristics for each patientThis study was partly funded by Fundación Jiménez Díaz Hospital, Instituto de Salud Carlos III (PI16/01852), Delegación del Gobierno para el Plan Nacional de Drogas (20151073), American Foundation for Suicide Prevention (AFSP) (LSRG-1-005-16), the Madrid Regional Government (B2017/BMD-3740 AGES-CM 2CM; Y2018/TCS-4705 PRACTICO-CM) and Structural Funds of the European Union. MINECO/FEDER (‘ADVENTURE’, id. TEC2015–69868-C2–1-R) and MCIU Explora Grant ‘aMBITION’ (id. TEC2017–92552-EXP), the French Embassy in Madrid, Spain, The foundation de l’avenir, and the Fondation de France. The work of D. Ramírez and A. Artés-Rodríguez has been partly supported by Ministerio de Economía of Spain under projects: OTOSIS (TEC2013–41718-R), AID (TEC2014–62194-EXP) and the COMONSENS Network (TEC2015–69648-REDC), by the Ministerio de Economía of Spain jointly with the European Commission (ERDF) under projects ADVENTURE (TEC2015– 69868-C2–1-R) and CAIMAN (TEC2017–86921-C2–2-R), and by the Comunidad de Madrid under project CASI-CAM-CM (S2013/ICE-2845). The work of P. Moreno-Muñoz has been supported by FPI grant BES-2016-07762

The Global academic research organization network: Data sharing to cure diseases and enable learning health systems.

Introduction:Global data sharing is essential. This is the premise of the Academic Research Organization (ARO) Council, which was initiated in Japan in 2013 and has since been expanding throughout Asia and into Europe and the United States. The volume of data is growing exponentially, providing not only challenges but also the clear opportunity to understand and treat diseases in ways not previously considered. Harnessing the knowledge within the data in a successful way can provide researchers and clinicians with new ideas for therapies while avoiding repeats of failed experiments. This knowledge transfer from research into clinical care is at the heart of a learning health system. Methods:The ARO Council wishes to form a worldwide complementary system for the benefit of all patients and investigators, catalyzing more efficient and innovative medical research processes. Thus, they have organized Global ARO Network Workshops to bring interested parties together, focusing on the aspects necessary to make such a global effort successful. One such workshop was held in Austin, Texas, in November 2017. Representatives from Japan, Taiwan, Singapore, Europe, and the United States reported on their efforts to encourage data sharing and to use research to inform care through learning health systems. Results:This experience report summarizes presentations and discussions at the Global ARO Network Workshop held in November 2017 in Austin, TX, with representatives from Japan, Korea, Singapore, Taiwan, Europe, and the United States. Themes and recommendations to progress their efforts are explored. Standardization and harmonization are at the heart of these discussions to enable data sharing. In addition, the transformation of clinical research processes through disruptive innovation, while ensuring integrity and ethics, will be key to achieving the ARO Council goal to overcome diseases such that people not only live longer but also are healthier and happier as they age. Conclusions:The achievement of global learning health systems will require further exploration, consensus-building, funding aligned with incentives for data sharing, standardization, harmonization, and actions that support global interests for the benefit of patients