No Information about Me without Me: Technology, Privacy, and Home Monitoring

Abstract

Big Brother or guardian angel? New monitoring technologies hold tremendous promise for enabling older people to continue living independently in the community and at the same time can threaten their privacy, security, and autonomy. Who should know whether you have fallen? Or how many times you went to the bathroom last night? What if you have an activity-monitoring device and want to turn it off for a while-can you? What if you do not want to be monitored, but your son or daughter or physician insists so that they can see if you should move to assisted living? Are monitoring technologies Big Brother or guardian angel? The answer will depend on how the technologies are designed and used and on whether the safeguards employed to avoid potential harm can do so without diminishing the benefit. The principle of No information about without me can help assure that older people make their own choices about home monitoring and protection of their own privacy and autonomy. This principle is based on the concept of shared decision-making as it is applied in healthcare and adopts the terminology from a phrase No decision about without me that is often used in the Veterans Health Administration of the U.S. Department of Veterans Affairs. No information about without me requires that an individual be given complete control over whether he or she is to be monitored and, if so, over who has access to the information. In addition, any information gathered must be presented to the person monitored in a way the person can understand and use. PRIVACY Central to this discussion are the concept of privacy and its determinants. Privacy is difficult to define but basically refers to a person's ability to control access to personal information (Lester, 2001). Privacy is thus the ability to decide who learns what information about you. That people should have the ability to protect their privacy is a well-established ethical principle. This principle has also been recognized as a constitutional right by the United States Supreme Court in a series of landmark decisions including Griswold vs. Connecticut (1965) and Roe vs. Wade (1973). Still, privacy remains a very fluid concept that changes and evolves as societal beliefs shift. Outside of a healthcare context, consider how notions of privacy have evolved since September 11, 2001. With the advent of that terrorist attack, individual privacy rights have been limited in the name of protecting the security of the country and reducing the risks of further attacks (Farmer and Mann, 2003). These limitations have been very controversial: The USA Patriot Act (2001) gave the government unprecedented powers to monitor American citizens, and its renewal has been accompanied by much controversy and protracted debate (Savage, 2006; Whitehead and Aden, 2002). The recent revelation that the National security Agency has been wiretapping U.S. citizens without receiving judicial authorization has also raised new concerns about privacy and what the limits of governmental interventions should be (Risen and Lichtblau, 2005). Healthcare also has seen shifts in the understanding of privacy and how to protect it. The advent of electronic medical records raised concerns about access to private health information and led to the passage ten years ago of the privacy provisions of the Health Insurance Portability and Accountability Act (HIPAA), (1996). The legislation has completely changed the practice of healthcare and the way that information is shared between patients and their providers and between providers and third parties (U.S. Department of Health and Human Services, 2003). Although HIPAA has its critics, it is clear that the act has brought important changes to how people think about privacy in a healthcare context. TECHNOLOGY THAT ENABLES AGING IN PLACE A variety of technologies are available to help older people remain independent and living at home for as long as possible. …

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