Ethical aspects of using GPS for tracking people with dementia: recommendations for practice.

BACKGROUND: Problems with out-of-home mobility are among the more common behavioral disturbances in dementia. Today people with dementia can be aided by easily accessible assistive technologies, such as tracking devices using Global Positioning Systems (GPS). Attitudes toward these technologies are still inconclusive and their use with people with dementia raises ethical concerns. The lack of ethical consensus on the use of GPS for people with dementia underlines the need for clearer policies and practical guidelines. METHODS: Here we summarize qualitative and quantitative findings from a larger research project on the ethical aspects of using GPS for tracking people with dementia. RESULTS: The findings are formulated in a list of recommendations for policy-makers as well as for professional and family caregivers. Among other points, the recommendations indicate that the preferences and best interests of the people with dementia should be central to the difficult decisions required in dementia care. Further, no-one should be coerced into using tracking technology and, where possible, people with dementia must be involved in the decision-making and their consent sought. CONCLUSIONS: The decision whether, when and how to use GPS for tracking people with dementia should be made at the time of diagnosis jointly by the person with dementia, his/her family and professional caregivers. This decision should be made in formal structured meetings facilitated by a professional team.

Families' and professional caregivers' views of using advanced technology to track people with dementia.

in this study we examined the ethical aspects of the use of the Global Positioning Systems (GPS) to track people with dementia. The findings are based on qualitative data gathered from focus groups of family and professional caregivers. The most important theme was the need to balance patients' need for safety with the need to preserve their autonomy and privacy. The main potential benefit of the use of GPS was related to the peace of mind of the caregivers themselves. The findings also suggest that caregivers' views change according to the locus of responsibility of the caregivers for the safety of people with dementia. The caregivers give preference to patients' safety more than autonomy when they are responsible for the patients. When the patients are under the responsibility of other caregivers, they give preference to patients' autonomy more than their safety. Overall, the variety and the depth of the views of different stakeholders toward the use of electronic tracking for people with dementia presented in this article provide a meaningful contribution to the ethical debate on this topic.

Applied technologies in humanitarian assistance: report of the 2009 Applied Technology Working Group.

Information and communication technologies, especially in the forms of mobile telecommunications, satellite imaging, and geographical information systems, promise to significantly improve the practice of humanitarian relief. A working group convened at the Humanitarian Action Summit 2009, has begun investigating the challenges to implementing these technologies in field operations, keeping in mind the ethical considerations of linking people to place, and pledging to build a community of practice among academics, practitioners, and developers.

The ethics of Google Earth: crossing thresholds from spatial data to landscape visualisation.

'Virtual globe' software systems such as Google Earth are growing rapidly in popularity as a way to visualise and share 3D environmental data. Scientists and environmental professionals, many of whom are new to 3D modeling and visual communications, are beginning routinely to use such techniques in their work. While the appeal of these techniques is evident, with unprecedented opportunities for public access to data and collaborative engagement over the web, are there nonetheless risks in their widespread usage when applied in areas of the public interest such as planning and policy-making? This paper argues that the Google Earth phenomenon, which features realistic imagery of places, cannot be dealt with only as a question of spatial data and geographic information science. The virtual globe type of visualisation crosses several key thresholds in communicating scientific and environmental information, taking it well beyond the realm of conventional spatial data and geographic information science, and engaging more complex dimensions of human perception and aesthetic preference. The realism, perspective views, and social meanings of the landscape visualisations embedded in virtual globes invoke not only cognition but also emotional and intuitive responses, with associated issues of uncertainty, credibility, and bias in interpreting the imagery. This paper considers the types of risks as well as benefits that may exist with participatory uses of virtual globes by experts and lay-people. It is illustrated with early examples from practice and relevant themes from the literature in landscape visualisation and related disciplines such as environmental psychology and landscape planning. Existing frameworks and principles for the appropriate use of environmental visualisation methods are applied to the special case of widely accessible, realistic 3D and 4D visualisation systems such as Google Earth, in the context of public awareness-building and agency decision-making on environmental issues. Relevant principles are suggested which lend themselves to much-needed evaluation of risks and benefits of virtual globe systems. Possible approaches for balancing these benefits and risks include codes of ethics, software design, and metadata templates.

Using mobile location data in biomedical research while preserving privacy.

Location data are becoming easier to obtain and are now bundled with other metadata in a variety of biomedical research applications. At the same time, the level of sophistication required to protect patient privacy is also increasing. In this article, we provide guidance for institutional review boards (IRBs) to make informed decisions about privacy protections in protocols involving location data. We provide an overview of some of the major categories of technical algorithms and medical-legal tools at the disposal of investigators, as well as the shortcomings of each. Although there is no "one size fits all" approach to privacy protection, this article attempts to describe a set of practical considerations that can be used by investigators, journal editors, and IRBs.

What Are Ethical Implications of Regionalization of Trauma Care?

Outcomes for severely injured patients are improved when they are treated at trauma centers. However, interfacility transfers can delay time-sensitive treatments not requiring the resources of tertiary institutions. Regionalized trauma systems allow physicians to decrease delays in care, prevent inadequate treatment, and ultimately reduce preventable deaths. Although precise risks and benefits of triage choices are unknowable, estimating them is a process well known to surgeons. Recognizing patient transfers as integral to optimal care delivery systems, rather than as detracting from them, is essential.

Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives.

Vast quantities of personal health information and private identifiable information are being created through mobile apps, wearable sensors, and social networks. While new strategies and tools for obtaining health data have expanded researchers' abilities to design and test personalized and adaptive health interventions, the deployment of pervasive sensing and computational techniques to gather research data is raising ethical challenges for Institutional Review Boards (IRBs) charged with protecting research participants. To explore experiences with, and perceptions about, technology-enabled research, and identify solutions for promoting responsible conduct of this research we conducted focus groups with human research protection program and IRB affiliates. Our findings outline the need for increased collaboration across stakeholders in terms of: (1) shared and dynamic resources that improve awareness of technologies and decrease potential threats to participant privacy and data confidentiality, and (2) development of appropriate and dynamic standards through collaboration with stakeholders in the research ethics community.

Does the Shoe Fit? Ethical, Legal, and Policy Considerations of Global Positioning System Shoes for Individuals with Alzheimer's Disease.

As the overall incidence of Alzheimer's disease rises, the burden on caregivers and law enforcement institutions will increase to find individuals who wander. As such, technological innovations that could reduce this burden will become increasingly important. One such innovation is the GPS Shoe. As with any innovation involving the transfer of personal data to third parties, potential pitfalls with respect to loss of privacy and inadequate consent counterbalance the substantial promise of GPS shoes. To some extent, advance planning can mitigate these concerns, wherein individuals willingly elect to be monitored before their impairments progress to a stage that makes such authorization impractical. Nonetheless, tension may arise between the peace of mind of caregivers and family members and other important considerations at the intersection of autonomy, privacy, dignity, and consent. Ultimately, confronting ethical, legal, and policy considerations at the front end of product development and deployment will help ensure that new technologies are used wisely and that their lifesaving potential is realized.

Electronic tracking for people with dementia: an exploratory study of the ethical issues experienced by carers in making decisions about usage.

Electronic tracking through GPS (global positioning system) is being used to monitor and locate people with dementia who are vulnerable to becoming lost. Through a review of the literature and an original study, this article examined ethical issues associated with use in a domestic setting. The qualitative study consisted of in-depth interviews with 10 carers who were using electronic tracking. The study explored the values, beliefs and contextual factors that motivated carers to use electronic tracking. It examined the extent of involvement of the person with dementia in decision-making and it explored the various ethical dilemmas encountered by carers when introducing the tracking system. As an issue that emerged from the interviews, specific attention was paid to exploring covert usage. From the study findings, recommendations have been made for research and practice about the use of electronic tracking in dementia care.

The use of global positioning systems in promoting safer walking for people with dementia.

There are about 5 million people in Europe who have dementia, approximately half of whom need daily care. A common reason why dementia sufferers are admitted to long-term care is because of "wandering", i.e. leaving home without informing a carer, thereby potentially putting themselves at risk. Common methods of managing wandering include locking doors or alerting carers when a door is opened. A new method of managing wandering is by using electronic location devices. These depend on the satellite-based global positioning system (GPS). People can wear a location device in the form of a watch or pendant, or carry it like a mobile phone. This offers affected individuals the possibility of safe walking, with the reassurance that they can be found quickly if lost. However, it is not known how effective this method is and its use raises questions about safety and individual civil liberties. GPS location is a potentially useful method of managing wandering in dementia and there is considerable pressure on caregivers from commercial organisations to adopt the technique. Research is therefore required to determine which people are best suited for such devices, how effective they are in practice and what effect they have on important outcomes.

Confidentiality concerns with mapping survey data in reproductive health research.

The increasing availability of georeferenced datasets creates new opportunities to perform spatial analysis of social science and public health survey data, but also raises ethical issues regarding the potential for unintended violation of the confidentiality of respondents. This article examines these ethical challenges by reflecting on the experience of a study mapping the facilities that provide abortion-related services in Cambodia. The technique of masking is examined as a potential method for preventing reidentification of respondents in georeferenced surveys. Broader solutions are offered for ways to balance the potentially conflicting goals of spatial analysis and protection of confidentiality.

Ethical issues in public health informatics: implications for system design when sharing geographic information.

Public health programs today constitute a multi-professional inter-organizational environment, where both health service and other organizations are involved. Developing information systems, including the IT security measures needed to suit this complex context, is a challenge. To ensure that all involved organizations work together towards a common goal, i.e., promotion of health, an intuitive strategy would be to share information freely in these programs. However, in practice it is seldom possible to realize this ideal scenario. One reason may be that ethical issues are often ignored in the system development process. This investigation uses case study methods to explore ethical obstacles originating in the shared use of geographic health information in public health programs and how this affects the design of information systems. Concerns involving confidentiality caused by geographically referenced health information and influences of professional and organizational codes are discussed. The experience presented shows that disregard of ethical issues can result in a prolonged development process for public health information systems. Finally, a theoretical model of design issues based on the case study results is presented.