Advertisement

Ethics and Information Technology

, Volume 21, Issue 3, pp 253–265 | Cite as

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

  • Fiachra O’BrolcháinEmail author
  • Bert Gordijn
Original Paper
  • 248 Downloads

Abstract

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.

Keywords

Ethics Privacy Aging Dementia Intellectual disability Smart homes Assistive living technologies Informed consent 

Notes

Funding

This research was supported by funding from the charity RESPECT and the People Programme (Marie Curie Actions) of the European Union’s Seventh Framework Programme (FP7/2007-2013) under REA Grant agreement no. PCOFUND-GA-2013-608728. The ASSISTID programme is co-funded by the charity RESPECT and the European Commission and is coordinated by RESPECT’s research institute DOCTRID, a network of universities, service providers, and industry partners across Ireland, the US and the UK undertaking ground breaking research in intellectual disabilities and autism.

References

  1. Alam, M. R., Reaz, M. B. I., & Ali, M. A. M. (2012). A review of smart homes—Past, present, and future—IEEE Journals & Magazine. IEEE Transactions on Systems Man and Cybernetics Part C (Applications and Reviews). Retrieved October 25, 2018, from https://ieeexplore.ieee.org/document/6177682.
  2. Allen, A. (2016). Privacy and medicine. In E. N. Zalta (Ed.), The Stanford encyclopedia of philosophy (Winter 2016). Retrieved March 16, 2017, from https://plato.stanford.edu/archives/win2016/entries/privacy-medicine/.
  3. America Association on Intellectual and Developmental Disabilities. (2013). AAIDD. Retrieved January 26, 2016, from http://aaidd.org/intellectual-disability/definition.
  4. Badica, C., Brezovan, M., & Badica, A. (2013). An overview of smart home environments: Architectures, technologies and applications. In Proceedings of the sixth Balkan conference in informatics (p. 1036). CEUR-WS.org: BCI 2013.Google Scholar
  5. Balta-Ozkan, N., Boteler, B., & Amerighi, O. (2014). European smart home market development: Public views on technical and economic aspects across the United Kingdom, Germany and Italy. Energy Research & Social Science, 3, 65–77.  https://doi.org/10.1016/j.erss.2014.07.007.CrossRefGoogle Scholar
  6. Birchley, G., Huxtable, R., Murtagh, M., ter Meulen, R., Flach, P., & Gooberman-Hill, R. (2017). Smart homes, private homes? An empirical study of technology researchers’ perceptions of ethical issues in developing smart-home health technologies. BMC Medical Ethics, 18, 23.  https://doi.org/10.1186/s12910-017-0183-z.CrossRefGoogle Scholar
  7. Bradshaw, J., Saling, M., Hopwood, M., Anderson, V., & Brodtmann, A. (2004). Fluctuating cognition in dementia with Lewy bodies and Alzheimer’s disease is qualitatively distinct. Journal of Neurology, Neurosurgery and Psychiatry, 75(3), 382–387.  https://doi.org/10.1136/jnnp.2002.002576.CrossRefGoogle Scholar
  8. Buchanan, E. A., & Zimmer, M. (2016). Internet research ethics. In E. N. Zalta (Ed.), The Stanford encyclopedia of philosophy (Winter 2016). Retrieved April 22, 2017, from https://plato.stanford.edu/archives/win2016/entries/ethics-internet-research/.
  9. Centers for Disease Control and Prevention, N. C. for E. (2017). CDC—Healthy places—Healthy places terminology. Retrieved April 25, 2017, from https://www.cdc.gov/healthyplaces/terminology.htm.
  10. Chakravorty, A., Wlodarczyk, T., & Rong, C. (2013). Privacy preserving data analytics for smart homes. In 2013 IEEE security and privacy workshops (pp. 23–27).  https://doi.org/10.1109/SPW.2013.22.
  11. Charland, L. C. (2015). Decision-making capacity. In E. N. Zalta (Ed.), The Stanford encyclopedia of philosophy (Fall 2015). Retrieved April 22, 2017, from https://plato.stanford.edu/archives/fall2015/entries/decision-capacity/.
  12. Council of Europe. (1997). Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: Convention on human rights and biomedicine. Retrieved April 16, 2017, from http://www.coe.int/web/conventions/full-list.
  13. DeCew, J. (2015). Privacy. In E. N. Zalta (Ed.), The Stanford encyclopedia of philosophy (Spring 2015). Retrieved June 4, 2015, from http://plato.stanford.edu/archives/spr2015/entries/privacy/.
  14. Demiris, G., Rantz, M., Aud, M., Marek, K., Tyrer, H., Skubic, M., et al. (2004). Older adults’ attitudes towards and perceptions of “smart home” technologies: A pilot study. Medical Informatics and the Internet in Medicine, 29(2), 87–94.  https://doi.org/10.1080/14639230410001684387.CrossRefGoogle Scholar
  15. European Union. (2012). Charter of fundamental rights of the European Union. European Union.Google Scholar
  16. Faden, R. R., Kass, N. E., Goodman, S. N., Pronovost, P., Tunis, S., & Beauchamp, T. L. (2013a). An ethics framework for a learning health care system: A departure from traditional research ethics and clinical ethics. Hastings Center Report, 43(s1), S16–S27.  https://doi.org/10.1002/hast.134.CrossRefGoogle Scholar
  17. Faden, R., Kass, N., Whicher, D., Stewart, W., & Tunis, S. (2013b). Ethics and informed consent for comparative effectiveness research with prospective electronic clinical data. Medical Care, 51(8 Suppl 3), S53–S57.  https://doi.org/10.1097/MLR.0b013e31829b1e4b.CrossRefGoogle Scholar
  18. Farivar, C. (2015). Facebook’s facial recognition will one day find you, even while facing away. Retrieved August 28, 2015, from Ars Technica website: http://arstechnica.com/business/2015/06/facebooks-facial-recognition-will-one-day-find-you-even-while-facing-away/.
  19. Fields, L. M., & Calvert, J. D. (2015). Informed consent procedures with cognitively impaired patients: A review of ethics and best practices. Psychiatry and Clinical Neurosciences, 69(8), 462–471.  https://doi.org/10.1111/pcn.12289.CrossRefGoogle Scholar
  20. Forbes Technology Council. (2018). 14 predictions for the future of smart home technology. Retrieved October 25, 2018, from https://www.forbes.com/sites/forbestechcouncil/2018/01/12/14-predictions-for-the-future-of-smart-home-technology/.
  21. Friedman, C. P., Wong, A. K., & Blumenthal, D. (2010). Achieving a nationwide learning health system. Science Translational Medicine, 2(57), 57cm29.  https://doi.org/10.1126/scitranslmed.3001456.CrossRefGoogle Scholar
  22. Gergel, T., & Owen, G. S. (2015). Fluctuating capacity and advance decision-making in Bipolar Affective Disorder—Self-binding directives and self-determination. International Journal of Law and Psychiatry, 40, 92–101.  https://doi.org/10.1016/j.ijlp.2015.04.004.CrossRefGoogle Scholar
  23. Gillilland, N. (2018). How brands are using emotion-detection technology. Retrieved June 13, 2019, from Econsultancy website: https://econsultancy.com/how-brands-are-using-emotion-detection-technology/.
  24. Holm, S. (2001). Autonomy, authenticity, or best interest: Everyday decision-making and persons with dementia. Medicine, Health Care and Philosophy, 4(2), 153–159.  https://doi.org/10.1023/A:1011402102030.CrossRefGoogle Scholar
  25. Ioannidis, J. P. A. (2013). Informed consent, big data, and the oxymoron of research that is not research. The American Journal of Bioethics, 13(4), 40–42.  https://doi.org/10.1080/15265161.2013.768864.CrossRefGoogle Scholar
  26. Jaworska, A. (2017). Advance directives and substitute decision-making. In E. N. Zalta (Ed.), The Stanford encyclopedia of philosophy (Summer 2017). Retrieved April 22, 2017, from https://plato.stanford.edu/archives/sum2017/entries/advance-directives/.
  27. Kim, S. Y., Caine, E. D., Currier, G. W., Leibovici, A., & Ryan, J. M. (2001). Assessing the competence of persons with Alzheimer’s disease in providing informed consent for participation in research. The American Journal of Psychiatry, 158(5), 712–717.  https://doi.org/10.1176/appi.ajp.158.5.712.CrossRefGoogle Scholar
  28. Kim, S. Y. H., & Miller, F. G. (2014). Informed consent for pragmatic trials—The integrated consent model. New England Journal of Medicine, 370(8), 769–772.  https://doi.org/10.1056/NEJMhle1312508.CrossRefGoogle Scholar
  29. Lê, Q., Nguyen, H. B., & Barnett, T. (2012). Smart homes for older people: Positive aging in a digital world. Future Internet, 4(2), 607–617.  https://doi.org/10.3390/fi4020607.CrossRefGoogle Scholar
  30. Lobaccaro, G., Carlucci, S., Löfström, E., Lobaccaro, G., Carlucci, S., & Löfström, E. (2016). A review of systems and technologies for smart homes and smart grids. Energies, 9(5), 348.  https://doi.org/10.3390/en9050348.CrossRefGoogle Scholar
  31. Locke, J. (1689). The second treatise of government (3rd ed.). Blackwell: Oxford.Google Scholar
  32. Majumder, S., Aghayi, E., Noferesti, M., Memarzadeh-Tehran, H., Mondal, T., Pang, Z., et al. (2017). Smart homes for elderly healthcare—Recent advances and research challenges. Sensors (Basel, Switzerland), 17(11), 2496.  https://doi.org/10.3390/s17112496.CrossRefGoogle Scholar
  33. Marek, K. D., & Rantz, M. J. (2000). Aging in place: A new model for long-term care. Nursing Administration Quarterly, 24(3), 1–11.CrossRefGoogle Scholar
  34. Martin, D. J. F. (2014). Privacy and confidentiality. In H. A. M. J. ten Have & B. Gordijn (Eds.), Handbook of global bioethics (pp. 119–137). Dordrecht: Springer.  https://doi.org/10.1007/978-94-007-2512-6_72.CrossRefGoogle Scholar
  35. Martinelli, N. (2007). Emotion-recognition software knows what makes you smile. Wired. Retrieved June 13, 2019, from https://www.wired.com/2007/07/emotion-recognition-software-knows-what-makes-you-smile/.
  36. Mihailidis, A., Carmichael, B., & Boger, J. (2004). The use of computer vision in an intelligent environment to support aging-in-place, safety, and independence in the home. IEEE Transactions on Information Technology in Biomedicine, 8(3), 238–247.  https://doi.org/10.1109/TITB.2004.834386.CrossRefGoogle Scholar
  37. Moncrieff, S., Venkatesh, S., & West, G. (2007). Dynamic privacy in a smart house environment. In 2007 IEEE international conference on multimedia and expo (pp. 2034–2037).  https://doi.org/10.1109/ICME.2007.4285080.
  38. Nissenbaum, H. (2009). Privacy in context: Technology, policy, and the integrity of social life. Stanford, CA: Stanford University Press.Google Scholar
  39. O’Brolcháin, F. (2018). Autonomy benefits and risks of assistive technologies for persons with intellectual and developmental disabilities. Frontiers in Public Health.  https://doi.org/10.3389/fpubh.2018.00296.Google Scholar
  40. O’Brolcháin, F., Jacquemard, T., Monaghan, D., O’Connor, N., Novitzky, P., & Gordijn, B. (2015). The convergence of virtual reality and social networks: Threats to privacy and autonomy. Science and Engineering Ethics, 22, 1–29.  https://doi.org/10.1007/s11948-014-9621-1.CrossRefGoogle Scholar
  41. Roy, A., Memon, N., & Ross, A. (2017). MasterPrint: Exploring the vulnerability of partial fingerprint-based authentication systems. IEEE Transactions on Information Forensics and Security, 12(9), 2013–2025.  https://doi.org/10.1109/TIFS.2017.2691658.CrossRefGoogle Scholar
  42. Salvador-Carulla, L., Reed, G. M., Vaez-Azizi, L. M., Cooper, S.-A., Martinez-Leal, R., Bertelli, M., … Saxena, S. (2011). Intellectual developmental disorders: towards a new name, definition and framework for “mental retardation/intellectual disability” in ICD-11. World Psychiatry: Official Journal of the World Psychiatric Association (WPA), 10(3), 175–180.Google Scholar
  43. Stark, L. (2019). Facial recognition is the plutonium of AI. XRDS, 25(3), 50–55.  https://doi.org/10.1145/3313129.CrossRefGoogle Scholar
  44. The British Psychological Society. (2015). Guidance on the assessment and diagnosis of intellectual disabilities in adulthood. Retrieved from http://www.rcpsych.ac.uk/pdf/ID%20assessment%20guidance.pdf.
  45. The United Nations. (1948). Universal declaration of human rights. New York: United Nations.Google Scholar
  46. Trachsel, M., Hermann, H., & Biller-Andorno, N. (2015). Cognitive fluctuations as a challenge for the assessment of decision-making capacity in patients with dementia. American Journal of Alzheimer’s Disease and Other Dementias, 30(4), 360–363.  https://doi.org/10.1177/1533317514539377.CrossRefGoogle Scholar
  47. UNESCO (United Nation’s Educational Scientific and Cultural Organization). (2005). Universal declaration on bioethics and human rights. Retrieved November 27, 2014, from http://portal.unesco.org/en/ev.php-URL_ID=31058&URL_DO=DO_TOPIC&URL_SECTION=201.html.
  48. United Nations. (2006). Convention on the rights of people with disabilities. New York: United Nations.Google Scholar
  49. United Nations. (2015). World population ageing. New York: United Nations.Google Scholar
  50. Villar, F., Serrat, R., & Bravo-Segal, S. (2019). Giving them a voice: Challenges to narrative agency in people with dementia. Geriatrics, 4(1), 20.  https://doi.org/10.3390/geriatrics4010020.CrossRefGoogle Scholar
  51. WHO. (2016). Dementia fact sheet. Retrieved December 8, 2016, from WHO website: http://www.who.int/mediacentre/factsheets/fs362/en/.
  52. Ziefle, M., Rocker, C., & Holzinger, A. (2011). Medical technology in smart homes: Exploring the user’s perspective on privacy, intimacy and trust. In Proceedings of the 2011 IEEE 35th annual computer software and applications conference workshops (pp. 410–415).  https://doi.org/10.1109/COMPSACW.2011.75.

Copyright information

© Springer Nature B.V. 2019

Authors and Affiliations

  1. 1.Institute of Ethics, School of Theology, Philosophy, and MusicDublin City UniversityDublin 9Ireland

Personalised recommendations