Biodigital publics: personal genomes as digital media artifacts

The recent proliferation of personal genomics and direct-to-consumer (DTC) genomics has attracted much attention and publicity. Concern around these developments has mainly focused on issues of biomedical regulation and hinged on questions of how people understand genomic information as biomedical and what meaning they make of it. However, this publicity amplifies genome sequences which are also made as internet texts and, as such, they generate new reading publics. The practices around the generation, circulation and reading of genome scans do not just raise questions about biomedical regulation, they also provide the focus for an exploration of how contemporary public participation in genomics works. These issues around the public features of DTC genomic testing can be pursued through a close examination of the modes of one of the best known providers—23andMe. In fact, genome sequences circulate as digital artefacts and, hence, people are addressed by them. They are read as texts, annotated and written about in browsers, blogs and wikis. This activity also yields content for media coverage which addresses an indefinite public in line with Michael Warner’s conceptualisation of publics. Digital genomic texts promise empowerment, personalisation and community, but this promise may obscure the compliance and proscription associated with these forms. The kinds of interaction here can be compared to those analysed by Andrew Barry. Direct-to-consumer genetics companies are part of a network providing an infrastructure for genomic reading publics and this network can be mapped and examined to demonstrate the ways in which this formation both exacerbates inequalities and offers possibilities for participation in biodigital culture

The genome incorporated: constructing biodigital identity

The Genome Incorporated examines the proliferation of human genomics across contemporary media cultures. It explores questions about what it means for a technoscience to thoroughly saturate everyday life, and places the interrogation of the science/media relationship at the heart of this enquiry. The book develops a number of case studies in the mediation and consumption of genomics, including: the emergence of new direct-to-the-consumer bioinformatics companies; the mundane propagation of testing and genetic information through lifestyle television programming; and public and private engagements with art and science institutions and events. Through these novel sites, this book examines the proliferating circuits of production and consumption of genetic information and theorizes this as a process of incorporation. Its wide-ranging case studies ensure its appeal to readers across the social sciences

Sticks, balls or a ribbon? Results of a formative user study with bioinformaticians

User interfaces in modern bioinformatics tools are designed for experts. They are too complicated for\ud novice users such as bench biologists. This report presents the full results of a formative user study as part of a\ud domain and requirements analysis to enhance user interfaces and collaborative environments for\ud multidisciplinary teamwork. Contextual field observations, questionnaires and interviews with bioinformatics\ud researchers of different levels of expertise and various backgrounds were performed in order to gain insight into\ud their needs and working practices. The analysed results are presented as a user profile description and user\ud requirements for designing user interfaces that support the collaboration of multidisciplinary research teams in\ud scientific collaborative environments. Although the number of participants limits the generalisability of the\ud findings, the combination of recurrent observations with other user analysis techniques in real-life settings\ud makes the contribution of this user study novel

Challenges of web-based personal genomic data sharing

In order to study the relationship between genes and diseases, the increasing availability and sharing of phenotypic and genotypic data have been promoted as an imperative within the scientific community. In parallel with data sharing practices by clinicians and researchers, recent initiatives have been observed in which individuals are sharing personal genomic data. The involvement of individuals in such initiatives is facilitated by the increased accessibility of personal genomic data, offered by private test providers along with availability of online networks. Personal webpages and on-line data sharing platforms such as Consent to Research (Portable Legal Consent), Free the Data, and Genomes Unzipped are being utilized to host and share genotypes, electronic health records and family history uploaded by individuals. Although personal genomic data sharing initiatives vary in nature, the emphasis on the individuals’ control on their data in order to benefit research and ultimately health care has seen as a key theme across these initiatives. In line with the growing practice of personal genomic data sharing, this paper aims to shed light on the potential challenges surrounding these initiatives. As in the course of these initiatives individuals are solicited to individually balance the risks and benefits of sharing their genomic data, their awareness of the implications of personal genomic data sharing for themselves and their family members is a necessity. Furthermore, given the sensitivity of genomic data and the controversies around their complete de-identifiability, potential privacy risks and harms originating from unintended uses of data have to be taken into consideration

Searching Data: A Review of Observational Data Retrieval Practices in Selected Disciplines

A cross-disciplinary examination of the user behaviours involved in seeking and evaluating data is surprisingly absent from the research data discussion. This review explores the data retrieval literature to identify commonalities in how users search for and evaluate observational research data. Two analytical frameworks rooted in information retrieval and science technology studies are used to identify key similarities in practices as a first step toward developing a model describing data retrieval

Applying a User-centred Approach to Interactive Visualization Design

Analysing users in their context of work and finding out how and why they use different information resources is essential to provide interactive visualisation systems that match their goals and needs. Designers should actively involve the intended users throughout the whole process. This chapter presents a user-centered approach for the design of interactive visualisation systems. We describe three phases of the iterative visualisation design process: the early envisioning phase, the global specification hase, and the detailed specification phase. The whole design cycle is repeated until some criterion of success is reached. We discuss different techniques for the analysis of users, their tasks and domain. Subsequently, the design of prototypes and evaluation methods in visualisation practice are presented. Finally, we discuss the practical challenges in design and evaluation of collaborative visualisation environments. Our own case studies and those of others are used throughout the whole chapter to illustrate various approaches

From Bare Metal to Virtual: Lessons Learned when a Supercomputing Institute Deploys its First Cloud

As primary provider for research computing services at the University of Minnesota, the Minnesota Supercomputing Institute (MSI) has long been responsible for serving the needs of a user-base numbering in the thousands. In recent years, MSI---like many other HPC centers---has observed a growing need for self-service, on-demand, data-intensive research, as well as the emergence of many new controlled-access datasets for research purposes. In light of this, MSI constructed a new on-premise cloud service, named Stratus, which is architected from the ground up to easily satisfy data-use agreements and fill four gaps left by traditional HPC. The resulting OpenStack cloud, constructed from HPC-specific compute nodes and backed by Ceph storage, is designed to fully comply with controls set forth by the NIH Genomic Data Sharing Policy. Herein, we present twelve lessons learned during the ambitious sprint to take Stratus from inception and into production in less than 18 months. Important, and often overlooked, components of this timeline included the development of new leadership roles, staff and user training, and user support documentation. Along the way, the lessons learned extended well beyond the technical challenges often associated with acquiring, configuring, and maintaining large-scale systems.Comment: 8 pages, 5 figures, PEARC '18: Practice and Experience in Advanced Research Computing, July 22--26, 2018, Pittsburgh, PA, US

Identity in research infrastructure and scientific communication: Report from the 1st IRISC workshop, Helsinki Sep 12-13, 2011

Motivation for the IRISC workshop came from the observation that identity and digital identification are increasingly important factors in modern scientific research, especially with the now near-ubiquitous use of the Internet as a global medium for dissemination and debate of scientific knowledge and data, and as a platform for scientific collaborations and large-scale e-science activities.

The 1 1/2 day IRISC2011 workshop sought to explore a series of interrelated topics under two main themes: i) unambiguously identifying authors/creators & attributing their scholarly works, and ii) individual identification and access management in the context of identity federations. Specific aims of the workshop included:

• Raising overall awareness of key technical and non-technical challenges, opportunities and developments.
• Facilitating a dialogue, cross-pollination of ideas, collaboration and coordination between diverse – and largely unconnected – communities.
• Identifying & discussing existing/emerging technologies, best practices and requirements for researcher identification.

This report provides background information on key identification-related concepts & projects, describes workshop proceedings and summarizes key workshop findings