Privacy Attitudes among Early Adopters of Emerging Health Technologies.

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

Interactivity and Electronic Communication: An Experimental Study of Mediated Feedback.

Interpersonal critical feedback is a particularly important form of organizational communication. With the rise of distributed work practices, virtual teams, and other non-collocated forms of work, feedback must increasingly be communicated through electronic means. Electronic communication media can reduce and distort contextual information, affect the interpretation of social cues, and shape relationships among communicators. This dissertation develops a theory of communication interactivity and presents two experimental studies designed to understand how the interactivity of a communication environment affects the delivery and interpretation of critical feedback. In both experiments a participant received critical feedback about a document (s)he had written. The feedback was delivered in one of four mediated communication conditions. In two conditions, both the feedback provider and feedback recipient used the same communication medium, either videoconferencing or instant messaging. The other two conditions used mixed-media environments in which one participant sent messages through videoconferencing while the other replied using instant messaging. The first experiment examined how the communication environment affected both the critic and the feedback recipient, with experimental subjects in both roles. The second experiment focused only on the recipient’s reaction to criticism, so that uniform feedback was delivered to all participants by a confederate. The results of these experiments suggest that feedback delivery, interpretation, and use are affected by the communication environment. When feedback was delivered in videoconferencing instead of instant messaging, recipients found it less negative, formed better impressions of the critic, and believed the feedback more. Recipients were more likely to incorporate the critic’s suggestions into their document when the critic was sending feedback through videoconferencing, and when the recipient was able to reply in videoconferencing. There is some evidence that men and women react to communication media differently in the feedback process. The experiments provide limited support for the theory of interactivity in electronically mediated communication developed here.Ph.D.InformationUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttp://deepblue.lib.umich.edu/bitstream/2027.42/58470/1/mbietz_1.pd

Excavating Awareness and Power in Data Science: A Manifesto for Trustworthy Pervasive Data Research

Frequent public uproar over forms of data science that rely on information about people demonstrates the challenges of defining and demonstrating trustworthy digital data research practices. This paper reviews problems of trustworthiness in what we term pervasive data research: scholarship that relies on the rich information generated about people through digital interaction. We highlight the entwined problems of participant unawareness of such research and the relationship of pervasive data research to corporate datafication and surveillance. We suggest a way forward by drawing from the history of a different methodological approach in which researchers have struggled with trustworthy practice: ethnography. To grapple with the colonial legacy of their methods, ethnographers have developed analytic lenses and researcher practices that foreground relations of awareness and power. These lenses are inspiring but also challenging for pervasive data research, given the flattening of contexts inherent in digital data collection. We propose ways that pervasive data researchers can incorporate reflection on awareness and power within their research to support the development of trustworthy data science

Opportunities and challenges in the use of personal health data for health research

Objective: Understand barriers to the use of personal health data (PHD) in research from the perspective of three stakeholder groups: early adopter individuals who track data about their health, researchers who may use PHD as part of their research, and companies that market self-tracking devices, apps or services, and aggregate and manage the data that are generated. Materials and Methods: A targeted convenience sample of 465 individuals and 134 researchers completed an extensive online survey. Thirty-five hourlong semi-structured qualitative interviews were conducted with a subset of 11 individuals and 9 researchers, as well as 15 company/key informants. Results: Challenges to the use of PHD for research were identified in six areas: data ownership; data access for research; privacy; informed consent and ethics; research methods and data quality; and the unpredictable nature of the rapidly evolving ecosystem of devices, apps, and other services that leave “digital footprints.” Individuals reported willingness to anonymously share PHD if it would be used to advance research for the good of the public. Researchers were enthusiastic about using PHD for research, but noted barriers related to intellectual property, licensing, and the need for legal agreements with companies. Companies were interested in research but stressed that their first priority was maintaining customer relationships. Conclusion: 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

Collaboration in metagenomics: Sequence databases and the organization of scientific work. ECSCW '09

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

Research-Driven Stakeholders in Cyberinfrastructure Use and Development

Research has shown that failing to recognize and understand organizational subgroups, their cultures, and their reward systems can result in a failure of system adoption. Infrastructure building projects for science are complex forms of collaborative work that involve many subgroups. As part of an ongoing research project, we use ethnographic methods to explore the roles, categories, and relationships that are sometimes taken for granted in cyberinfrastructure research and development. We investigate the difficulty of modeling stakeholders in the development of research-driven, large-scale scientific research and describe the importance of identifying stakeholders according to research questions in addition to organizations or workplaces. 1

Synergizing in Cyberinfrastructure Development

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

Synergizing in Cyberinfrastructure Development

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