Joan H. Dzenowagis*, World Health Organization, Geneva, Switzerland Kevin A. Clauson*, Nova Southeastern University, College of Pharmacy, Palm Beach Gardens, United States Francisco J. Grajales Iii*, eHealth Strategy Office, University of British Columbia Faculty of Medicine, Vancouver, Canada Track: Research Presentation Topic: Ethical & legal issues, confidentiality and privacy Presentation Type: Oral presentation Submission Type: Panel Presentation Building: MaRS Centre, 101 College Street, Toronto, Canada Room: Auditorium Date: 2009-09-18 03:30 PM – 04:30 PM Last modified: 2009-08-14

If you are the presenter of this abstract (or if you cite this abstract in a talk or on a poster), please show the QR code in your slide or poster (QR code contains this URL).

Does the Social Web demand a new ethical paradigm? Not only is the broad adoption of Web 2.0 tools and services dramatically changing patterns of interconnection in the health domain; it is also raising new questions about content stewardship. Of concern from an ethical perspective is that health-related data are made available, or potentially available, through the actions of individuals, communities or websites. These technologies have created a Web 2.0 enabled nexus wherein consumers, health care professionals, business entities and "virtual Samaritans" are meeting, interacting and collaborating. This includes creating new types of relationships where health data are generated and shared, such as with bi-directional advising on health matters and problem-solving health related dilemmas. Less evident is that vast repositories of individual health "data" are being generated by users who voluntarily post and share personal information in various forms of virtual communities. Further, privately-owned websites may collect, store, share or sell health data as part of their terms of use. Individual search data and patient-generated content are also aggregated and characterized by search engines. Third parties may have access to the data, without the users’ knowledge or consent, to study, advertise, profit from, and target consumers. In addition, publicly available application programming interfaces or embedded search capabilities enable any person with basic computing skills to obtain access to data and use or misuse it.

These patterns and practices underscore the need to examine what Web 2.0 demands in terms of ethical conduct in the health domain. How do concerns about health data ownership, provenance, reliability, responsibility, liability and rights - or what can be collectively thought of as content stewardship - impact privacy concerns and trust in connected health? How should governments or organizations protect consumers? Are liability issues relevant in the virtual world? Should Web 2.0 business practices be re-examined? Does the nature of health in Web 2.0 require different rules, or should traditional rules still apply?

This interactive session will use an audience response system to engage the audience in exploring key ethical challenges in connected health. Panel members from academic and international organizations will draw on their expertise in public health, consumer safety and Social Web consumer behavior to highlight the challenges of Ethics 2.0; together the panel and audience will assess these issues and consider possible approaches to shaping the next-generation ethics of connected health.