Abstract
Successful technologies’ ubiquity changes uses, users and ethicolegal responsibilities and duties of care. We focus on dementia to review critically ethicolegal implications of increasing use of social networking sites (SNS) by those with compromised decision-making capacity, assessing concerned parties’ responsibilities. Although SNS contracts assume ongoing decision-making capacity, many users’ may be compromised or declining. Resulting ethicolegal issues include capacity to give informed consent to contracts, protection of online privacy including sharing and controlling data, data leaks between different digital platforms, and management of digital identities and footprints. SNS uses in healthcare raise additional issues. Online materials acting as archives of ‘the self’ bolster present and future identities for users with compromised capacity. E-health involves actual and potential intersection of data gathered for the purpose of delivering health technological support with data used for social networking purposes. Ethicolegal guidance is limited on the implications of SNS usage in contexts where users have impaired/reduced capacity to understand and/or consent to sharing personal data about their health, medication or location. Vulnerable adults and family/carers face uncertainty in regard to consent, data protection, online identity and legal liabilities. Ethicolegal responsibilities and duties of care of technology providers, healthcare professionals, regulatory bodies and policymakers need clarification.
Similar content being viewed by others
References
Alzheimer’s Society. (2007). Dementia UK. London: Alzheimer’s Society.
Astell, A. J., Ellis, M. P., Bernardi, L., Alm, N., Dye, R., Gowans, G., et al. (2010). Using touch screen computer to support relationships between people with dementia and caregivers. Interacting with Computers, 22, 267–275.
Banerjee, S., & Wittenberg, R. (2009). Clinical and cost effectiveness of services for early diagnosis and intervention in dementia. International Journal of Geriatric Psychiatry, 24, 748–754.
Bartlett, P. (2008). The mental capacity act 2005 (2nd ed.). Oxford: Oxford University Press.
Bausch, S., & Han, L. (2006). Social networking sites grow 47 percent, year over year, reaching 45 percent of web users. http://www.nielsen-netratings.com/pr/pr_060511.pdf. Accessed May 18, 2011.
Bennett, S., Mahon, K., & Kervin, L. (2008). A digital natives debate: A critical review of the evidence. British Journal of Educational Technology, 39, 775–786.
Bickmore, T., Puskar, K., Schlenk, E. A., Pfeifer, L. M., & Sereika, S. M. (2010). Maintaining reality: Relational agents for antipsychotic medication adherence. Interacting with Computers, 22(2010), 276–288.
Boger, J., & Mihailidis, A. (2011). The future of intelligent assistive technologies for cognition: Devices under development to support independent living and ageing with choice. Neurorehabilitation, 28, 271–280.
Bulgurcu, B. (2010). Antecedents and outcomes of information privacy concerns in online social networking: A theoretical perspective. Sprouts Working Papers on Information Systems, 10(81), 1–35.
Castellot, L. R., Giuliano, A., & Mulvenna, M. D. (2010). State of the art in electronic assistive technologies for people with dementia. London: Springer.
Chen, V. H., Duh, H. B., & Ng, C. W. (2009). Players who play to make others cry: The effects of anonymity and immersion. In ACE ‘09 proceedings of the international conference on advances in entertainment technology. doi:10.1145/1690388.1690454.
Cho, H., Lee, J.-S., & Chung, S. (2010). Optimistic bias about online privacy risks: Testing the moderating effects of perceived controllability and prior experience. Computers in Human Behavior, 28, 987–995.
Crichton, J., & Koch, T. (2007). Living with dementia: Curating self-identity. Dementia, 6, 365.
De Aroaz, A. F. (2011). Telefónica launches electronic health venture as nations squeeze spending on medical care—Interview: Alvaro Fernadez de Araoz of Telefonica. http://www.globaltelecomsbusiness.com/Article/2634289/sectors/25198/interviewIvaro-Fernndez-de-Araoz-of-Telefnica.html. Accessed April 20, 2011.
Dening, T., & Milne, A. (Eds.). (2011). Mental health and care homes. Oxford: Oxford University Press.
Department of Health. (2005). Building telecare in England. London: The Stationery Office.
Dewsbury, G., & Linskill, J. (2011). Smart home technology for safety and functional independence: The UK experience. Neurorehabilitation, 28, 249–260.
Dillon, R. S. (2010). Respect for persons, identity and information technology. Ethics and Information Technology, 12, 17–28.
Europa. (2011). Europa press release: Viviane Reding, vice president of the European Commission, European Commission Justice Minister: The reform of the EU data protection directive: The impact on businesses. European Business Summit, Brussels, May 18, 2011. Speech 11/349. http://europa.eu. Accessed June 20, 2011.
Ewbank, A. D., Kay, A. G., Foulger, T. S., & Carter, H. L. (2010). Conceptualising codes of conduct in social networking communities. In S. Dasgupta (Ed.), Social computing: Concepts, methodologies, tools and applications (pp. 2096–2112). Washington, DC: George Washington University.
Facebook. (2011). http://www.facebook.com/press/info.php?statistics. Accessed May 19, 2011.
Fortinsky, R. H. (2008). Diagnosis and early support. In M. Downs & B. Bowers (Eds.), Excellence in dementia care: Research into practice (pp. 265–284). Maidenhead: Open University Press.
Goldsmith, J., & Wu, T. (2006). Who controls the internet? Illusions of a borderless world. Oxford: Oxford University Press.
Grayson, R. (2011). Managing your digital footprint. New York: Rosen.
Halpern, J., & Arnold, R. M. (2008). Affective forecasting: An unrecognised challenge to making serious health decisions. Society of General Internal Medicine, 23, 1708–1712.
Hart, J. (2010). Criminal infiltration of financial institutions. Journal of Money Laundering Control, 13, 55–65.
Holland, H. B. (2010). Symposium: Internet expression in the 21st century: Where technology and law collide: Privacy paradox 2.0. Widener Law Journal, 19, 893–954.
House of Commons Committee of Public Accounts. (2008). Improving services and support for people with dementia, HC 228, The Stationary Office, 2008.
Kich-Heartt, E. I., & Prion, S. (2010). Social networking and HIPAA: Ethical concerns for nurses. Nurse Leader, 8, 56–58.
Kuner, C., Cate, F. H., Millard, C., & Svantesson, D. J. B. (2011). Moving forward together. International Data Privacy Law, 1, 81–82.
Kuzma, J. (2011). Empirical study of privacy issues among social networking sites. Journal of International Commercial Law and Technology, 6, 74–85.
Lewis, S., & Ariyachandra, T. (2011). Seniors and social networking. Journal of Information Systems, 4, 4–18.
Light, B., & McGrath, K. (2010). Ethics and social networking: A disclosive analysis of Facebook. Information Technology and People, 23, 290–311.
Light, B., McGrath, K., & Griffiths, M. (2008). More than just friends? Facebook, disclosive ethics and the morality of technology. In ICIS 2008 proceedings, paper 193. http://aisel.aisnet.org/icis2008/193. Accessed June 21, 2011.
Liu, C., Huang, Y., & Pan, Q. (2011). A study on technology architecture and serving approaches of electronic government system. Communications on Computer and Information Science, 114, 112–117.
Mackenzie, R., & Biggs, H. (2006). End of life decision making, policy and the criminal justice system: Untrained carers assuming responsibility (UCARes) and their uncertain legal liabilities. Genomics, Society and Policy, 2(1), 118–128.
Mackenzie, R., & Sakel, M. (2010). The neuroscience of cruelty as brain damage: Legal framings of capacity and ethical issues in the neurorehabilitation of motor neurone disease and behavioural variant frontotemporal dementia. In M. Freeman (Ed.), Law and neuroscience (pp. 283–307). Oxford: Oxford University Press.
Mackenzie, R., & Sakel, M. (2011). Teleneurology: Ethics of devolving responsibilities from clinicians to families and/or carers. British Journal of Neuroscience Nursing, 7, 429–432.
Mackenzie, R., & Watts, J. (2011a). Including emotionality in tests of competence: How does neurodiversity affect measures of free will and agency in relation to medical decision-making? American Journal of Bioethics Neuroscience, 2, 27–36.
Mackenzie, R., & Watts, J. (2011b). Can clinicians and carers make valid decisions about others’ decision-making capacities unless tests of decision-making competence and capacity include emotionality and neurodiversity? Tizard Learning Disability Review, 16, 30–37.
Manders-Huits, N. (2010). Practical versus moral identities: Identity management. Ethics and Information Technology, 12, 43–55.
Milne, A. (2010). The D word: Reflections on the relationship between stigma and dementia. Journal of Mental Health, 19, 227–233.
Milne, A. (2011). Living with dementia in a care home: Capturing the experiences of residents. Quality in Ageing and Older Adults Special Issue, Dementia Care: a positive future, 12(2), 76–85.
Milne, A., Hamilton-West, K., & Hatzidimitriadou, E. (2005). GP attitudes to early diagnosis of dementia: Evidence of improvement. Aging and Mental Health, 9, 449–455.
Mitchell, K. J., Finkelhor, D., Jones, L. M., & Wolak, J. (2010). Use of social network sites in online sex crimes against minors. Journal of Adolescent Health, 47, 183–190.
National Institute for Health and Clinical Excellence and Social Care Institute for Excellence. (2007). Guidelines on supporting people with dementia and their carers. London: British Psychological Society and the Royal College of Psychiatrists
Nielsen, L., & Mather, M. (2011). Emerging perspectives in social neuroscience and neuroeconomics of aging. SCAN, 6, 149–164.
O’Neil, M., Freeman, M., Christensen, V., Telerant, A., Addleman, A., & Kansagagtara, D. (2011). Non-pharmacological Interventions for behavioral symptoms of dementia: A systematic review of the evidence. VA-ESP project #05-225. Washington, DC: US Health Service research and Development Services.
Olivier, P., & Wallace, J. (2009). Digital technologies and the emotional family. International Journal of Human-Computer Studies, 67, 204–214.
Pallis, G., Zeinelpour-Yatzi, D., & Dikaikos, M. D. (2011). Online social netwoks: Status and trends. Studies in Computational Intelligence, 231, 213–234.
Parrish, J. (2010). PAPA knows best: Principles for the ethical sharing of information on social networking sites. Ethics and Information Technology, 12, 187–193.
Patchin, J. W., & Hinduja, S. (2010). Trends in online social networking. New Media in Society, 12, 197–216.
Pew. (2010, August) Internet report: Older adults and social media. http://www.pewinternet.org/Reports/2010/Older-Adults-and-Social-Media.aspx. Accessed April 22, 2011.
Pfeil, U., Arjan, R., & Zaphiris, P. (2009). Age differences in online social networking—a study of user profiles and the social capital divide among teenagers and older users in MySpace. Computers in Human Behavior, 25, 643–654.
Powell, C. D. (2011). You already have zero privacy. Get over it! What would Warren and Brandeis argue for privacy for social networking? Pace Law Review, 31, 146–181.
Prensky, M. (2009). H. sapiens digital: From digital natives and digital immigrants to digital wisdom. Innovate Journal of Online Education, 5, 697–705.
Press Complaints Commission. (2009). Privacy in the age of social networking. http://www.pcc.org.uk/news/newsletter/december/privacyandsocialnetworking. Accessed March, 2011.
Press Complaints Commission. (2011). PCC chairman addresses Westminster media forum on regulating privacy and online media. http://www.pcc.org.uk/news/index.html?article=NzAwNQ. Accessed March, 2011.
Reding, V. (2011). The upcoming data protection reform for the European Union. International Data Privacy Law, 1, 3–5.
Reilly, P. (2011). ‘Antisocial’ networking in Northern Ireland: Policy responses to young peoples’ use of social media for organising antisocial behaviour. Policy and Internet 10. doi:10.2202/1944-2866.1071.
Rothernpieler, P., Becker, C., & Fischer, C. (2011). Privacy concerns in a remote monitoring and social networking platform for assisted living. IFIP Advances in Information and Communication Technology, 352, 219–230.
Schikof, Y., Mulder, I., & Choenni, S. (2010). Who will watch (over) me? Humane monitoring in dementia care. International Journal of Human-Computer Studies, 68, 410–422.
Schwartz, A. (2011). Identity management and privacy: A rare opportunity to get it right. Communications of the ACM, 54, 22–24.
Shoemaker, D. (2010). Self-exposure and exposure of the self: Informational privacy and the presentation of identity. Ethics and Information Technology, 12, 3–15.
Suler, J. (2004). The online disinhibition effect. Cyberpsychology and Behavior, 7, 321–326.
Tee, K., Brush, A. J. B., Inkpen, K. M. (2009). Exploring communication and sharing between extended families. International Journal of Human-Computer Studies, 67(2), 128–138.
Turk, J. (2011). Computer literacy as life skills for a Web 2.0 world. SIGCSE, 11, 417–422.
Vallor, S. (2011). Carebots and caregivers: Sustaining the ethical ideal of care in the twenty-first century. Philosophy and Technology, 24(3), 251–268.
Van Dijk, N. (2010). Property, privacy and personhood in a world of ambient intelligence. Ethics and Information Technology, 12, 57–69.
Van House, N. A. (2009). Collocated photo sharing, story-telling, and the performance of self. International Journal of Human-Computer Studies, 67(12), 1073–1086.
Vinson, K. E. (2010). The blurred boundaries of social networking in the legal field: Just “Face” it. Research paper 10-37. Boston, MA: Suffolk Law School.
Wakefield, J. (2011). How safe is your smartphone? BBC news, March 15, 2011. http://www.bbc.co.uk/news/technology-12710763. Accessed June 20, 2011.
Wilcock, G. K., Lilienfeld, S., & Gaens, E. (2000). Efficacy and safety of galantamine in patients with mild to moderate Alzheimer’s disease: Multicentre randomised controlled trial. British Medical Journal, 321(7274), 1445–1449.
Williams, J., Wollf, A., & Dryden, F. (2010). The higher you climb, the further you see! Aiming high for children with disability. Paediatrics and Child Health, 20, 327–330.
Wong, R. (2009). Social networking: A conceptual analysis of a data controller. Jottels Communications Law, 14, 142–149.
Xu, H., Parks, R., Chu, C.-H., & Zhang, X. (2010). Information disclosure and online social networks: From the case of Facebook news feed controversy to a theoretical understanding. In AMCIS 2010 Proceedings, paper 503. http://aisel.aisnet,org/amcis2010/503.
Zimmer, M. (2010). “But the data is already public”: On the ethics of research in Facebook. Ethics and Information Technology, 12, 313–325.
Zuk, N. (2011). Social media and the security risks they pose for business. BBC news, April 28, 2011. http://bbc.co.uk/news/business-13212528. Accessed June 21, 2011.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Batchelor, R., Bobrowicz, A., Mackenzie, R. et al. Challenges of ethical and legal responsibilities when technologies’ uses and users change: social networking sites, decision-making capacity and dementia. Ethics Inf Technol 14, 99–108 (2012). https://doi.org/10.1007/s10676-012-9286-x
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10676-012-9286-x