Designing as a Moral Enterprise: TRIL Researchers Reflect on the Centrality of the Person

Athena McLean, Ph.D. , Cathy Bailey, Ph.D., Cormac Sheehan, Ph.D., Technology Research for Independent Living (TRIL), The Ethnography Research Unit (ERU), Irish Centre for Social Gerontology, National University of Ireland, Galway

Early in 2007 the TRIL Project (Technology for Independent Living) was launched in Ireland -- a monumental multi/inter-disciplinary endeavor resulting from negotiations between INTEL and IDA -- to find technological solutions to enable elders to remain in their homes, where they prefer to be. Built into this project is feedback from ethnographers regarding how elders live their lives and their responses to developing innovations. This approach, we argue, is not only good practice, since it results in viable solutions; it more broadly encompasses a moral enterprise given its immense implications for promoting health and life

In an excellent review article published earlier this year on ethical guidelines for technology research and development, Mahoney and her colleagues people engage more fully in the world and expanding their human potential, the cane serves a humanistic purpose.

Now, let us look at the other implication of the IRB reviewer's comment -- that some interventions can be considered intrinsically humanistic. What interventions might hold intrinsic humanistic worth? I would suppose the reviewer had in mind those that involve face-to-face human contact. Indeed, if you have ever seen a loving adult child caring for an ailing parent, there is no doubt you have witnessed humanism. If you have ever seen a sensitive clinician delicately probing to find the source of someone's pain, again the transaction is humanistic. And then there is the exceptional nursing assistant who can slow her pace and take her cue from the agitated person with dementia to work with to ensure the elder's infections are checked and that the elder remains clean. These transactions are undoubtedly humanistic; indeed they involve a deep level (perhaps even a spiritually transcendent level) of interhuman/ intersubjective connectivity that the ethical philosopher Levinas calls "respect for the Face." ² But humanism is not intrinsic to these face-face encounters either, even though, being face-to-face with someone might appear to necessitate such a humanism. Certainly there are adults, worn out perhaps from the incessant demands of their elderly parent, who have expressed mean words to them. Have there not also been rushed clinical encounters that left the patient feeling as if something were missing? What about the reports of abusive nursing home attendants that pervade the press? And of course over our history, humans have been known to perform horrendous acts upon one another? No, humanism is not intrinsic to person-person encounters, any more than it is to technology. Humanism can be detected instead in the distinctive qualityand delivery of any given human transaction. It is thus in the particularities of aninterpersonal encounter where humanism may be found (although not guaranteed), not in the general nature of interpersonal encounters per se.

Indeed the writers of the article recognize this point when they argue that if technology is dehumanizing and removes human control, that is "because of the way that humans envisioned and developed the application." Similarly, we might say that if a face-to-face human interaction is dehumanizing and removes human control from one of the members in the transaction, it is because of the way it was structured and carried out by the more powerful member of the pair. It is this element of difference in power, too, where fear of technology may lie. For technology offers an immense capability to extend human will -- both for good and evil, as it has historically done. It is this recognition of its immense power that haunts the human imagination and instills caution and fear in some people, in this case IRB reviewers.

But as the writers suggest, these fears and concerns can be allayed through responsible consideration about the people for whom the applications are intended. They go on to define a comprehensive ethical framework for research and design that includes humanistic concerns of respect for persons, confidentiality, and justice and distributional fairness.

The writers rightly argue that review panels should be focused on ethical issues, in an unbiased manner. However, they too readily dismiss as Orwellians those who seem overly cautious or voice concerns about issues of "privacy and surveillance" or "infringements of personal control and autonomy." The very articulation of these concerns, they believe, suggests a close-mindedness to technology. "If one believes that technology is a problem," they flatly state, "then there is little likelihood that one can view it as a solution." This is where we must disagree. Establishing an ethical framework is a fundamental first step, but it is no guarantee. Ethical frameworks are themselves products constructed by people, and are themselves subject to subjective interpretation and implementation; there is no way around that. As s a moral enterprise, researchers and designers can never be too vigilant concerning those persons who are affected by their work; this is particularly true with vulnerable persons like the persons with dementia they are studying. Labelling those who bring up the possibility of a dark spectre as Orwellian, only closes dialogue and debate. It is always better to anticipate and handle humanistic concerns head on -- the very goal of ethical practice -- as long as they do not needlessly cripple our work.

The tendency for entropy, however, is always great, despite immense effort and creativity by researchers and designers. An example will help illustrate. In 1974, the first two special care units opened in the United States as nursing home residents for people with mild dementia. They incorporated special environmental features devised in order to help older people with mild dementia maintain their autonomy and cognitive and functional capacity. The units opened were result of the pioneering efforts of the great environmental psychologist and design expert, Powell Lawton.³ As early as the 1960s, Lawton and his colleagues had envisioned creating an environment that challenged the standard "dehumanizing" custodial care that continues to mark many long term care settings.⁴ To accomplish that, he spent over a decade conducting research, several years of planning with experts in gerontology, geriatrics, and architecture. Ahead of his time, he also spoke directly with the intended users of the design - residents, staff and family - whose lives would ultimately be affected the design.

The environment was designed to compensate for cognitive deficits while attempting to offer stimulation that could help maintain cognitive and social capacities. This was done by an open floor plan to afford visibility and spark interest in activities. Special design features, such as color-coding of rooms served as visual memory aids to enable the resident to navigate the environment.⁵ There was a kitchen for cooking activities, large dining tables to stimulate sociability, bright color schemes, and a gazebo that served as a pleasant haven for residents.⁶ These were intended to add warmth and elements of the "good life" for the elders who resided there.⁷

By the early nineties, these innovations were all but gone. The bright color scheme was now replaced with an institutional beige, which was seen as more salable to elder's families, who were the target consumer. The color coding of rooms was gone and the kitchen in disuse. The gazebo was now used by staff as a getaway from their chores, and the residents, for whom it was originally intended as a feature to improve their quality of life, were forbidden to go there. And, as residents became more cognitively impaired, the open design resounded with noisiness that compounded other institutional noises from newer innovations, like the loudspeaker and floor cleaners now required after each meal as part of regulations. Residents could no longer tolerate sitting in close proximity to one another during meals, so the large tables were also replaced with small card tables, where residents sat alone. Sadly, the vision of the planners no longer served to benefit the residents whose lives were intended to be enriched by the design. A number of changes in the residents, along with fiscal, institutional and regulatory factors had conspired against the original ideal despite the vision, energies, and wisdom of its early planners. And although his ideas have inspired a generation or design experts in long term care, Powell Lawton himself came to question the value of special care units before his death in 2001.⁸

The point is that even under the best circumstances, and after the greatest efforts to anticipate potential problems and implement an innovative design, unforeseen circumstances can impede these efforts. Design never occurs in a vacuum, and if it is to be realized, this complexity must be appreciated. This is why it is better to overcompensate for possible challenge on any front by expanding , not closing, the dialogue with those who remain doubtful. Dealing with these issues up front can only maximize the possibility of success.

One way to do this, Mahoney and colleagues assert, is by involving a multidisciplinary research that "blends expertise from social, clinical, and technical disciplines." As members of the recently formed Ethnographic Research Unit for the TRIL Project (Technology Research for Independent Living), we fully agree. The TRIL project, we believe, takes it one step further to an even more integrated "interdisciplinary" research that demands ongoing feedback between and among the social science team (the ethnographers) with the other strands of the project.