Joel Fischer - Data Work: How Energy Advisors and Clients Make IoT Data Accountable
We present fieldwork findings from the deployment of an interactive sensing system that supports the work of energy advisors who give face-to-face advice to low- income households in the UK. We focus on how the system and the data it produced are articulated in the interactions between professional energy advisors and their clients, and how they collaboratively anticipate, rehearse, and perform data work. In addition to documenting how the system was appropriated in advisory work, we elaborate the ‘overhead cost’ of building collaborative action into connected devices and sensing systems, and the commensurate need to support discrete workflows and accountability systems to enable the methodical incorporation of the IoT into collaborative action. We contribute an elaboration of the social, collaborative methods of data work relevant to those who seek to design and study collaborative IoT systems.
Pepita Stringer - My Genomic Life – who, what, when, why and how
“Imagine having your whole genome sequenced…” This proposition was put to six participants at a Stanford Medicine X 2016 focus group and to eleven interviewees at the University of Nottingham, England, in 2016. This presentation highlights some of the themes derived.
Increased availability of genomics services magnifies the importance of managing multiple genetic findings. In 2013, Daack-Hirsch et al.’s participants believed they had shared responsibility for managing genomic results information with healthcare professionals.
This exploratory study of attitudes towards personal genomics, asked participants what their preferences for receiving and sharing their Whole-Genome Sequencing (WGS) results information were; what categories of results they would want, who and how they would want to be told, and who they would share results with. Structured questions facilitated nominal voting responses. Open questions facilitated discussion of motivations, ethics, challenges, benefits and risks: “Who should decide what is reported to people undertaking WGS?”, “What affects your desire to know more or less; sooner or later?”, “Under what conditions would you want to know family members’ WGS results?”. We also explored age-related considerations.
We found an overwhelming desire to know one’s WGS information despite uncertainty. Participants opted for data sharing with family, healthcare professionals and researchers. Imagining they were children, raised concerns of maturity and reservations about receiving certain categories of results. Open questions revealed benefits such as enhanced intimacy, discovery of a new layer of life offering a deeper understanding of self and family. Challenges included ethical research considerations, resistance to change, the need for strength and the potential for results information to maintain detrimental health behaviours. Contrasts and similarities between views of focus group participants and interviewees will be presented.
Accepting the limitation that these are only preliminary findings for a larger research project, they reveal some perceptions of receiving, managing and sharing personal genomic results, activities that will become more relevant to self-care, health and wider society.
Daack-Hirsch, S., Driessnack, M., Hanish, A., Johnson, V. A., Shah, L. L., Simon, C. M., & Williams, J. K. (2013). “Information is information”: a public perspective on incidental findings in clinical and research genome-based testing. Clinical Genetics, 84(1), 11–8. http://doi.org/10.1111/cge.12167