Privacy challenges in smart homes for people with dementia and people with intellectual disabilities

The aim of this paper is to analyse the ethical issues relating to privacy that arise in smart homes designed for people with dementia and for people with intellectual disabilities. We outline five different conceptual perspectives on privacy and detail the ways in which smart home technologies may violate residents’ privacy. We specify these privacy threats in a number of areas and under a variety of conceptions of privacy. Furthermore, we illustrate that informed consent may not provide a solution to this problem. We offer a number of recommendations that designers of smart homes for people with dementia and people with intellectual disabilities might follow to ensure the privacy of potential residents.

[1]  Feliciano Villar,et al.  Giving Them a Voice: Challenges to Narrative Agency in People with Dementia , 2019, Geriatrics.

[2]  Martina Ziefle,et al.  Medical Technology in Smart Homes: Exploring the User's Perspective on Privacy, Intimacy and Trust , 2011, 2011 IEEE 35th Annual Computer Software and Applications Conference Workshops.

[3]  Arun Ross,et al.  MasterPrint: Exploring the Vulnerability of Partial Fingerprint-Based Authentication Systems , 2017, IEEE Transactions on Information Forensics and Security.

[4]  Costin Badica,et al.  An Overview of Smart Home Environments: Architectures, Technologies and Applications , 2013, BCI.

[5]  John P A Ioannidis,et al.  Informed Consent, Big Data, and the Oxymoron of Research That Is Not Research , 2013, The American journal of bioethics : AJOB.

[6]  S. Holm.  Autonomy, authenticity, or best interest: Everyday decision-making and persons with dementia , 2001, Medicine, health care, and philosophy.

[7]  J Bradshaw,et al.  Fluctuating cognition in dementia with Lewy bodies and Alzheimer’s disease is qualitatively distinct , 2004, Journal of Neurology, Neurosurgery & Psychiatry.

[8]  N. Biller-Andorno,et al.  Cognitive Fluctuations as a Challenge for the Assessment of Decision-Making Capacity in Patients With Dementia , 2015, American journal of Alzheimer's disease and other dementias.

[9]  D. Blumenthal,et al.  Achieving a Nationwide Learning Health System , 2010, Science Translational Medicine.

[10]  G. Owen,et al.  Fluctuating capacity and advance decision-making in Bipolar Affective Disorder — Self-binding directives and self-determination , 2015, International journal of law and psychiatry.

[11]  Steven N Goodman,et al.  An ethics framework for a learning health care system: a departure from traditional research ethics and clinical ethics. , 2013, The Hastings Center report.

[12]  Luke Stark.  Facial recognition is the plutonium of AI , 2019, XRDS.

[13]  J. D. Calvert,et al.  Informed consent procedures with cognitively impaired patients: A review of ethics and best practices , 2015, Psychiatry and clinical neurosciences.

[14]  Fiachra O’Brolcháin.  Autonomy Benefits and Risks of Assistive Technologies for Persons With Intellectual and Developmental Disabilities , 2018, Front. Public Health.

[15]  Peter A. Flach,et al.  Smart homes, private homes? An empirical study of technology researchers’ perceptions of ethical issues in developing smart-home health technologies , 2017, BMC medical ethics.

[16]  Noel E. O'Connor,et al.  The Convergence of Virtual Reality and Social Networks: Threats to Privacy and Autonomy , 2015, Science and Engineering Ethics.

[17]  Quynh Lê,et al.  Smart Homes for Older People: Positive Aging in a Digital World , 2012, Future Internet.

[18]  Salvatore Carlucci,et al.  A Review of Systems and Technologies for Smart Homes and Smart Grids , 2016 .

[19]  Zhibo Pang,et al.  Smart Homes for Elderly Healthcare—Recent Advances and Research Challenges , 2017, Sensors.

[20]  M. Rantz,et al.  Aging in place: a new model for long-term care. , 2000, Nursing administration quarterly.

[21]  J. Locke,et al.  The second treatise of government , 1952 .

[22]  Council of Europe..  Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and Biomedicine , 1997 .

[23]  Arlene S. Kanter.  Do Human Rights Treaties Matter? the Case for the United Nations Convention on the Rights of People with Disabilities , 2019 .

[24]  Alex Mihailidis,et al.  The use of computer vision in an intelligent environment to support aging-in-place, safety, and independence in the home , 2004, IEEE Transactions on Information Technology in Biomedicine.

[25]  G. Currier,et al.  Assessing the competence of persons with Alzheimer's disease in providing informed consent for participation in research. , 2001, The American journal of psychiatry.

[26]  S. Saxena,et al.  Intellectual developmental disorders: towards a new name, definition and framework for “mental retardation/intellectual disability” in ICD‐11 , 2011, World psychiatry : official journal of the World Psychiatric Association.

[27]  Louis C. Charland.  Passion and Decision-Making Capacity in Anorexia Nervosa , 2015 .

[28]  Priyanka More,et al.  Privacy Preserving Data Analytics for Smart Homes , 2015 .

[29]  Mamun Bin Ibne Reaz,et al.  A Review of Smart Homes—Past, Present, and Future , 2012, IEEE Transactions on Systems, Man, and Cybernetics, Part C (Applications and Reviews).

[30]  Helen Nissenbaum,et al.  Privacy in Context - Technology, Policy, and the Integrity of Social Life , 2009 .

[31]  W. Stewart,et al.  Ethics and Informed Consent for Comparative Effectiveness Research With Prospective Electronic Clinical Data , 2013, Medical care.

[32]  Privacy and medicine. , 1972, Lancet.

[33]  M. Skubic,et al.  Older adults' attitudes towards and perceptions of ‘smart home’ technologies: a pilot study , 2004, Medical informatics and the Internet in medicine.

[34]  N. Balta-Ozkan,et al.  European smart home market development: Public views on technical and economic aspects across the United Kingdom, Germany and Italy , 2014 .

[35]  Daniele Senzani.  CHARTER OF FUNDAMENTAL RIGHTS OF THE EUROPEAN UNION , 2016 .

[36]  E. Buchanan,et al.  Internet Research Ethics , 2012 .

[37]  Svetha Venkatesh,et al.  Dynamic Privacy in a Smart House Environment , 2007, 2007 IEEE International Conference on Multimedia and Expo.

[38]  F. Miller,et al.  Informed consent for pragmatic trials--the integrated consent model. , 2014, The New England journal of medicine.

[39]  Jin H. Im,et al.  Privacy , 2002, Encyclopedia of Information Systems.

[40]  Eric Puybaret,et al.  Universal Declaration of Human Rights , 2006 .