9,781 research outputs found
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
A Critical Look at Decentralized Personal Data Architectures
While the Internet was conceived as a decentralized network, the most widely
used web applications today tend toward centralization. Control increasingly
rests with centralized service providers who, as a consequence, have also
amassed unprecedented amounts of data about the behaviors and personalities of
individuals.
Developers, regulators, and consumer advocates have looked to alternative
decentralized architectures as the natural response to threats posed by these
centralized services. The result has been a great variety of solutions that
include personal data stores (PDS), infomediaries, Vendor Relationship
Management (VRM) systems, and federated and distributed social networks. And
yet, for all these efforts, decentralized personal data architectures have seen
little adoption.
This position paper attempts to account for these failures, challenging the
accepted wisdom in the web community on the feasibility and desirability of
these approaches. We start with a historical discussion of the development of
various categories of decentralized personal data architectures. Then we survey
the main ideas to illustrate the common themes among these efforts. We tease
apart the design characteristics of these systems from the social values that
they (are intended to) promote. We use this understanding to point out numerous
drawbacks of the decentralization paradigm, some inherent and others
incidental. We end with recommendations for designers of these systems for
working towards goals that are achievable, but perhaps more limited in scope
and ambition
Blockchain for Genomics:A Systematic Literature Review
Human genomic data carry unique information about an individual and offer
unprecedented opportunities for healthcare. The clinical interpretations
derived from large genomic datasets can greatly improve healthcare and pave the
way for personalized medicine. Sharing genomic datasets, however, pose major
challenges, as genomic data is different from traditional medical data,
indirectly revealing information about descendants and relatives of the data
owner and carrying valid information even after the owner passes away.
Therefore, stringent data ownership and control measures are required when
dealing with genomic data. In order to provide secure and accountable
infrastructure, blockchain technologies offer a promising alternative to
traditional distributed systems. Indeed, the research on blockchain-based
infrastructures tailored to genomics is on the rise. However, there is a lack
of a comprehensive literature review that summarizes the current
state-of-the-art methods in the applications of blockchain in genomics. In this
paper, we systematically look at the existing work both commercial and
academic, and discuss the major opportunities and challenges. Our study is
driven by five research questions that we aim to answer in our review. We also
present our projections of future research directions which we hope the
researchers interested in the area can benefit from
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