Beyond Consent: User Defined Privacy in Ubicomp

Demographic changes, longer life-spans, war, and advances in medical care which make previously fatal injuries or birth defects into manageable lifelong disabilities can be predicted to increase the need for home health care. The demand for home health care will be increased by social changes, in particular, the movement towards the mainstreaming of and community living for the chronically ill and disabled. Cost containment policies by insurers and hospitals have also contributed in that these policies lead to earlier discharge of chronically ill patients into the care of their families. Ubiquitous computing, or ubicomp, holds promise for the development of easy-to-use technologies that enhance the ability of caregivers to monitor those in their care, but most extant technologies have not been developed in a socially-aware, privacy-sensitive context. More formal development of privacy-sensitive ubicomp design can enable nurturing rather than controlling ubicomp for independent living for the elderly and disabled. Ubicomp integrates technology into our everyday environments. Ubicomp fundamentally alters privacy by creating continuous detailed data flows. The privacy challenge is particularly acute in the case of home-based health care where vulnerable populations risk enforced technological intimacy. The promise of ubicomp is also particularly great in the area of home-based ubicomp with the aging of the population. The combination of a vulnerable population, embedded computing, and inadequate privacy regimes may lead to a digital perfect storm. Such an environment can truly result is a system that is too much computer-based nurturing for the subject, with nurturing broadly conceived as including protection. In fact, ubicomp in the home has the ability to lead us to an Orwellian society where people can no longer detect when they are interacting with the network and creating data records. Currently, there is no accepted methodology for creating respectful, nurturing home-based ubicomp. Privacy in ubicomp for home-based elder care currently requires elders who can articulate specific technical privacy design choices, and designers who bring a profound understanding of privacy to the implementations of these specifications. Neither of these is likely. There is no single answer for the challenge of designing for privacy. Privacy is a socially constructed value that differs significantly across individuals. Value-sensitive design has the potential to influence privacy by respecting the individual elder’s conception of privacy. This is a challenge because value-sensitive design must be predicated upon a shared concept of the particular value under consideration. If invited to the Nurturing Technologies in the Domestic Environment Workshop, we would begin with an introduction to value-sensitive design and a high-level overview of the competing concepts of privacy. We will critique each privacy construct with respect to home-based health care. We also hope to initiate a shared critique of privacy as constructed in home-based ubicomp systems, as indeed “too nurturing” for the elder concerned.