by Clara Berridge, University of Washington School of Social Work
Digital contact tracing via proximity tracing to mitigate COVID-19 spread has become a focal topic in the media in the U.S. Privacy law scholars have raised alarms about privacy, civil liberties, and mission creep, arguing that exceptions to civil liberties protections made in a time of crisis often persist. Just prior to the start of the pandemic, Grigorovich and Kontos asserted in a forum article in The Gerontologist that there is an urgent need to assess values underpinning the use of monitoring technologies in long-term care residential settings. A reporter for The Verge recently observed that nursing homes were becoming early adopters of digital contact tracing. I was interviewed for the piece about how these parallel worlds intersect because I study ethics and value tensions and policy issues in monitoring technology used in elder care. This reporter learned about the transformation of existing location tracking devices in nursing homes into proximity tracing tools, and became astounded that the potential infringement on rights and privacy debated actively in the general population weren’t getting attention in the facility context. I recommend the piece and highlight a couple additional considerations.
Implications of being tracked
Years ago, Carnegie Mellon University researchers were developing facial recognition technology and testing it for dual use: anti-terrorism security in airports and resident and staff tracking in nursing homes. Others have pointed out that technologies developed for use in the U.S.’s criminal injustice system or for home security purposes are transferred into elder care environments. What are the implications of this genealogy?
With the use of location tracking technologies, nursing home resident behaviors are likely to be policed. In such risk averse settings, behaviors we all enjoy and freedoms we take for granted like choosing food that isn’t good for us may be prevented based on data from a device. A respondent from a survey I conducted of camera use in facility resident rooms wrote something that stuck with me: “Installation of a camera recording the most private spaces is the very definition of institutionalization.” Tracking movement without images is certainly less invasive than a camera, but is it desired by residents?
The problem of consent and decision making control
Consent for digital contact tracing is required for the general public. Consenting in nursing homes is difficult. Roughly half of nursing home residents have dementia. Comprehension is a prerequisite for asserting informed preferences and we have evidence that older adults struggle to understand what monitoring technologies do and that caregivers may not prioritize communicating about this. As The Verge article notes, opt-out systems are often the default with monitoring technology installed for facility marketing purposes. Depending on one’s location and resources, it can be hard to find a facility, so moving into a facility with monitoring technology in use may not be a freely given choice. I have interviewed residents in a high-end, high-tech nursing home who complained that they could see the “weird technology eye” installed in every room, but had never been consulted about it or informed if it’s in use and how.
There is evidence from the home care context that older adults and their adult children may not agree on the cost/benefit analysis of monitoring technologies and that adult children may think it’s OK not to involve their parents in decisions. In one study, adult children grossly underestimated parents’ ability to comprehend basic functions of technologies used in care. We found that even when older parents are living at home and capable of giving consent, adult children may simply want to avoid conflict with a parent and judge it easier to install monitoring devices without discussion.
Unregulated, valuable data collection
Technology in elder care is largely unregulated despite major security risks and transmission of highly valuable health data. I just completed a Delphi study involving gerontechnology academic and industry experts in the U.S. and Canada about the near-future use of dementia care technologies, their potential benefits, risks, and risk mitigation options. A major theme in addition to the need for informed consenting processes, was concern over lack of sensitive data security and need for regulation. We don’t have consumer privacy law here that covers these practices, including digital contact tracing. U.S.-based writer Shoshana Zuboff notes that the being without laws to protect our data in the 21st century is like moving through the 20th century without labor and equal pay laws.
Socio-political context and structural problems
Before COVID-19, the Trump administration began weakening nursing home rules, such as the requirement that facilities employ an infection prevention specialist. Fatality rates from COVID-19 in nursing homes in the U.S. are significantly higher than those nationwide. More than 581,000 residents and staff of long-term care facilities have been infected and at least 87,000 have died. Testing for the virus has been slow to arrive to these desperate facilities and are a disaster when faulty kits have arrived. Only seven states require ongoing resident or staff testing. The federal agency that oversees nursing home quality (CMS) issued a recommendation that facilities test weekly but didn’t follow with the support to states to do so. Facilities don’t have the funds and are begging for tests. When they get them, results often take 4-5 days or longer. My 99-year-old grandmother’s nursing home spent months trying to obtain an initial round of testing, keeping families on edge with daily texts of continued delays.
The U.S. has done little to deserve the loyalty of nursing home and home care aides during a crisis that puts them and their families at additional risk. In all 50 states, direct care workers – disproportionately women of color – make a lower median wage than that of entry-level jobs such as janitors, retail salespersons, and customer service representatives. This low wage means that aides often have to work more than one job to make ends meet, which puts residents and other staff at greater risk for exposure. Adequate training is difficult with high turnover and dangerous understaffing.
These vulnerable populations are suffering in isolation, getting sick, and dying for the country’s lack of government leadership. It goes without saying that we lack a national plan, mobilization of resources, and commitment to saving lives. My grandmother lives with dementia in a nursing home where residents and staff have tested positive. Would proximity tracing in that facility put me at ease? Or would I rather that the facility had access to fast, reliable, frequent testing, with adequately paid staff so they aren’t working other jobs, proper infection control measures, single-occupancy rooms, and local and national political leaders who sent consistent, clear messages about masking and social distancing? In this situation, the pitfalls of technological solutionism hit home.