Abstract
Issues of privacy are undeniably central moral concerns in pervasive information and communication technology (PICT), as many aspects of individual privacy seem to be unavoidable casualties of the increased ubiquity of such technologies. It appears that many people make this trade-off willingly, as attested by the number of users of Facebook, Google, and other technologies that routinely mine personal data for commercial use. This large and growing population may take it for granted that elderly people experiencing (or perceived as experiencing) increasing physical frailty, decreasing mental competence, and the concomitant reliance on health professionals and other caregivers should be expected to give up a degree of privacy if it means staying in their own homes rather than moving to a nursing home or assisted living facility. As the end of life approaches, it may seem to many that privacy is less important than comfort. This chapter examines the relationship between privacy, competency, paternalism, coercion, and the elderly – a group that will likely be among the first to have PICT forced upon them in their own homes, probably by their own adult offspring.
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Notes
- 1.
The Pew Research Center for the People & the Press reported in 2006 that 29 % of those surveyed had living wills. http://www.people-press.org/2006/01/05/strong-public-support-for-right-to-die/. (Accessed 8.19.12). Another source reports a range between 25 and 40 %, depending upon the survey. http://www.freelegaladvicehelp.com/trust/wills/Statistics-On-Living-Wills.html. (Accessed 8.19.12)
- 2.
The Tuskegee Institute in Alabama was the site of a U.S. Public Health Service observational study of a population of poor and mostly illiterate African-American sharecroppers. The study began in the mid-1930s and examined the long-term effects of syphilis, for which there was no standard treatment when the study was initiated. The study’s major ethical issues include deception: The subjects were told they were being treated when they were not, and they were not informed that they were part of a study, making it impossible for them to consent to the study. About fifteen years after the study began, penicillin became the standard treatment for syphilis, but subjects were not treated with it. The study was finally terminated in the mid-1970s.
The Willowbrook experiment is significant for applied and biomedical ethics for similar reasons, primarily because it involved using mentally challenged, institutionalized children in non-therapeutic research (research from which they did not stand to directly benefit medically). The children at the Willowbrook State School for the Retarded were intentionally infected with hepatitis (which admittedly was endemic to the institution) for the study and the consent obtained from their families was arguably incomplete and coercive.
Synopses of these and other cases can be found in (Rothman 2003).
- 3.
For a review of literature on responses to robots and technology in health care settings, including home health care, and differences between older and younger generations, see Broadbent et al. (2009). In addition to documented differences in acceptance of technology arising from age and generational differences, it has been demonstrated that culture, gender, and possibly education all have an impact on technology acceptance and thus should be considered as well when installing PICT in elders’ homes.
- 4.
Masahiro Mori’s “Uncanny Valley” hypothesis, and the subsequent research it spawned, is the most obvious example. See (Misselhorn 2009) for a discussion.
- 5.
References
Broadbent, E., R. Stafford, and B. MacDonald. 2009. Acceptance of healthcare robots for the older population: Review and future directions. International Journal of Social Robotics 1: 319–330.
Libin, A.V., and E.V. Libin. 2004. Person-robot interactions from the robopsychologists point of view: The robotic psychology and robotherapy approach. Proceedings of the IEEE 92: 1789–1803.
Misselhorn, Catrin. 2009. Empathy with inanimate objects and the uncanny valley. Minds and Machines: Journal for Artificial Intelligence, Philosophy, and Cognitive Science 19(3): 345–359.
Rothman, David J. 2003. Strangers at the bedside: A history of how law and bioethics transformed medical decision making. Hawthorne: Aldine de Gruyter.
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Jones, C.M. (2014). Preserving Life, Destroying Privacy: PICT and the Elderly. In: Pimple, K. (eds) Emerging Pervasive Information and Communication Technologies (PICT). Law, Governance and Technology Series, vol 11. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-6833-8_6
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