Although challenges exist in leveraging PHD for research, there are many opportunities for stakeholder engagement, and experimentation with these data is already taking place. These early examples foreshadow a much larger set of activities with the potential to positively transform how health research is conducted.

This paper investigates the work of creating infrastructure, using as a case study the development of cyberinfrastructure for metagenomics research. Specifically, the analysis focuses on the role of embeddedness in infrastructure development. We expand on the notion of human infrastructure to develop the concepts of synergizing, leveraging, and aligning, which denote the active processes of creating and managing relationships among people, organizations, and technologies in the creation of cyberinfrastructure. This conceptual lens highlights how embeddedness is not only an important result of infrastructure development, but is also a precursor that can act as both a constraint and a resource for development activities.

The co-authors of this paper hereby state their intention to work together to launch the Genomic Observatories Network (GOs Network) for which this document will serve as its Founding Charter. We define a Genomic Observatory as an ecosystem and/or site subject to long-term scientific research, including (but not limited to) the sustained study of genomic biodiversity from single-celled microbes to multicellular organisms.An international group of 64 scientists first published the call for a global network of Genomic Observatories in January 2012. The vision for such a network was expanded in a subsequent paper and developed over a series of meetings in Bremen (Germany), Shenzhen (China), Moorea (French Polynesia), Oxford (UK), Pacific Grove (California, USA), Washington (DC, USA), and London (UK). While this community-building process continues, here we express our mutual intent to establish the GOs Network formally, and to describe our shared vision for its future. The views expressed here are ours alone as individual scientists, and do not necessarily represent those of the institutions with which we are affiliated.

Cyberinfrastructures are virtual organizations comprised of people and large-scale scientific computational infrastructures. Cyberinfrastructures endeavor to support "cutting-edge" science and must continually evolve and be under development in order to maintain their relevance and usefulness. This qualitative study of a cyberinfrastructure development project to support the new science of metagenomics investigates how sustaining cyberinfrastructure entails continually realigning the relationships among people, technologies, and organizations.

Core) assists researchers university-wide in computational structural biology techniques and incorporating structural biology/bioinformatics into their grants and publications. The SBI Core works with a diverse population of researchers from numerous departments and provides support to an ever-changing body of research. The computational biology services provided by the SBI Core are data-intensive and use a diverse and distributed set of applications for processing, data storage, and data management.As the amount of data and number of projects have increased, the SBI Core requires an effective strategy for managing data and facilitating data sharing between the SBI Core and the researchers it assists. The UNC-CH Health Sciences Library (HSL) has begun a collaborative project with the SBI Core to identify the crucial data management needs and to envision new roles for the library in e-science and data management. In partnership, the SBI Core and the HSL have identified major obstacles in data sharing, data management, and data access.Furthermore, the SBI Core and the HSL will develop solutions in which the library facilitates collaboration among campus resources and matches unmet needs to external resources. One of the library's goals in this proof-of-concept project with the SBI Core is to become a central campus resource for research support and data management.

Abstract. In this paper we conduct an ethnographic study of work to explore the interaction between scientific collaboration and computing technologies in the emerging science of metagenomics. In particular, we explore how databases serve to organize scientific collaboration. We find databases existing across scientific communities where scientists have different practices and priorities. We suggest while these databases appear to be boundary objects, they are better understood as boundary negotiating artifacts. Due to rapid scientific and technical innovation the tools, practices, and scientific questions change over the course of merely a few years resulting in challenges for collaboration.

IntroductionAdvances in health technology such as genome sequencing and wearable sensors now allow for the collection of highly granular personal health data from individuals. It is unclear how people think about privacy in the context of these emerging health technologies. An open question is whether early adopters of these advances conceptualize privacy in different ways than non-early adopters.PurposeThis study sought to understand privacy attitudes of early adopters of emerging health technologies.MethodsTranscripts from in-depth, semi-structured interviews with early adopters of genome sequencing and health devices and apps were analyzed with a focus on participant attitudes and perceptions of privacy. Themes were extracted using inductive content analysis.ResultsAlthough interviewees were willing to share personal data to support scientific advancements, they still expressed concerns, as well as uncertainty about who has access to their data, and for what purpose. In short, they were not dismissive of privacy risks. Key privacy-related findings are organized into four themes as follows: first, personal data privacy; second, control over personal information; third, concerns about discrimination; and fourth, contributing personal data to science.ConclusionEarly adopters of emerging health technologies appear to have more complex and nuanced conceptions of privacy than might be expected based on their adoption of personal health technologies and participation in open science. Early adopters also voiced uncertainty about the privacy implications of their decisions to use new technologies and share their data for research. Though not representative of the general public, studies of early adopters can provide important insights into evolving attitudes toward privacy in the context of emerging health technologies and personal health data research.

New computational and sensing innovations, coupled with increasingly affordable access to consumer health technologies, allow individuals to generate personal health information that they are then able to submit to a shared archive or repository. This paper presents data donation as a model for healthfocused citizen science, with special attention to the ethical challenges and opportunities that this model presents. We also highlight some existing data donation projects curated by citizen scientists. After describing data donation in more detail, including its relationship to movements like the Quantified Self and research in personalized medicine, we report findings from the Health Data Exploration (HDE) Project's second annual Network Meeting, which was focused on data donation. These findings include identification of four challenges for the ethical conduct of health-focused data donation research: Participant protection, representativeness, incentives to participate, and governance. We use these insights as a springboard for further discussion of specific issues, pointing both to the current state of the field and our suggestions about potential pathways for addressing some of the challenges.