ETHICAL AND LEGAL CONSIDERATIONS WITH THE RELEASE OF PERSONAL INFORMATION USING A COMMUNITY AREA SILVER ALERT SYSTEM

With increasing prevalence of dementia, is growing demand for strategies to help find older adults who get lost due to memory impairment. The Community Area Silver Alert Program (C-ASAP) is an alert system that invites community members to search for missing seniors. The impact of the release of private information for the purpose of finding a missing vulnerable older person remains unexplored. The objective was to identify and describe the ethical and legal issues associated with release of personal information in the C-ASAP system. Four focus groups were convened across three Canadian provinces with stakeholders including persons with mild dementia, care partners, service providers, first responders and industry representatives. Focus groups revealed concerns about social (e.g., stigma) and physical (e.g., bodily harm) with the release of the name and photograph of the missing person, particularly given their vulnerability and the potential for the information to be used in criminal activity. However, the personal information to be released by C-ASAP is comparable with other registries. In high risk situations in which a person’s life is at danger, privacy may be of less concern than in low risk situations. Consultations with relevant stakeholders are therefore necessary to ensure all privacy concerns are met. Concerns uncovered in focus groups will be used to make improvements to C-ASAP prior to its deployment in three test cities. Study findings can also be used to inform policy, and guide other alert systems and programs intended to locate missing persons with dementia.