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.

Introduction

Advances 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.

Purpose

This study sought to understand privacy attitudes of early adopters of emerging health technologies.

Methods

Transcripts 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.

Results

Although 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.

Conclusion

Early 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.

Collaboration has become a dominant mode of scientific inquiry, and good collaborative processes are important for ensuring scientific quality and productivity. Often the participants in these collaborations are not collocated, yet distance introduces challenges. There remains a need for evaluative tools that can identify potential collaboration problems early and provide strategies for managing and addressing collaboration issues. This paper introduces a new research and diagnostic tool, the Collaboration Success Wizard (CSW), and provides two case studies of its use in evaluating ongoing collaborative projects in the health sciences. The CSW is designed both to validate and refine existing theory about the factors that encourage successful collaboration and to promote good collaborative practices in geographically distributed team-based scientific projects. These cases demonstrate that the CSW can promote reflection and positive change in collaborative science.

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.