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

Legal and Policy Framework for Promoting Equitable Access to Documentary Heritage

The National Mission for Manuscripts of India, in association with UNESCO, completed a research study to assist in the development of legal and policy framework and protocols for promoting equitable access to documentary heritage, relevant to India and other South Asian countries. This study report seeks to accurately identify and critically examine the legal and policy framework for promoting equitable access to our documentary heritage. The National Mission for Manuscripts is the most important institution in India creating bibliographic databases of manuscripts and engaged in the conservation and preservation of valuable manuscripts. This report engages with the legal and policy framework which envelops the lifecycle of the Mission’s work: the process of access to manuscripts, digitization of manuscripts and the creation of databases. By critically examining the legal rules in the practical context of the Mission’s work, the research team has put together the first such review of any such initiative in the protection of traditional knowledge in the country. The conclusions of the report are in the form of draft legal agreements and policy recommendations located in the discussion on various parts of the Mission’s work. While this report does not set out to be the final word on these significant policy initiatives, the report definitely makes significant progress in the policy debate and legal literature in this field. This report illustrates working patterns of the Mission within the legal and policy framework in the Country. This report will be a valuable sourcebook for understanding South Asian legal and policy framework for accessing documentary heritage collections. The draft legal agreements and policy recommendations, presented in this report, will also be valuable intervention tools for South Asian countries that share similar legal and policy framework within the sub-region

Big Data Privacy Context: Literature Effects On Secure Informational Assets

This article's objective is the identification of research opportunities in the current big data privacy domain, evaluating literature effects on secure informational assets. Until now, no study has analyzed such relation. Its results can foster science, technologies and businesses. To achieve these objectives, a big data privacy Systematic Literature Review (SLR) is performed on the main scientific peer reviewed journals in Scopus database. Bibliometrics and text mining analysis complement the SLR. This study provides support to big data privacy researchers on: most and least researched themes, research novelty, most cited works and authors, themes evolution through time and many others. In addition, TOPSIS and VIKOR ranks were developed to evaluate literature effects versus informational assets indicators. Secure Internet Servers (SIS) was chosen as decision criteria. Results show that big data privacy literature is strongly focused on computational aspects. However, individuals, societies, organizations and governments face a technological change that has just started to be investigated, with growing concerns on law and regulation aspects. TOPSIS and VIKOR Ranks differed in several positions and the only consistent country between literature and SIS adoption is the United States. Countries in the lowest ranking positions represent future research opportunities.Comment: 21 pages, 9 figure