Is Behaviour Tracking Minimally Invasive?

Here’s an interesting story about research into using RFIDs (radio frequency identification tags) to detect early signs of dementia.

From MIT Technology Review: Wireless Detectors for Dementia

Researchers at the University of South Florida (USF) have developed a wireless network that evaluates walking patterns in an attempt to detect early signs of dementia.

Currently, doctors ask patients to answer a series of questions to determine whether they may be suffering from Alzheimer’s or another form of dementia. But by the time a patient is diagnosed, she may have already begun to experience symptoms such as memory loss. Drugs that are currently available can only slow the progression of related diseases, so the earlier dementia is caught, the better a patient’s treatment will be.

Researchers are exploring ways to identify the condition earlier–for example, by detecting biomarkers, conducting new brain scans, or monitoring movements such as walking. The USF researchers have developed an RFID system that allows walking patterns to be monitored in a natural setting.

It’s a neat technological idea, if they get it to work. In the meantime, it’s research.

I wonder if USF regarded this as human-subjects research? Wearing a tracking device isn’t terribly invasive, but having your movements precisely monitored, 24 hours a day, might be. Informed consent should have been sought from the patients wearing the monitors (all were residents in a long term care residential setting) or their proxy decision-makers. It might not be invasive physically, just wearing a wrist monitor, but certainly it is an invasion of privacy to have someone else monitoring and tracking your every movement — if you haven’t consented to it.

Also worth noting that this is research going on within an institutional setting. Does that raise the bar? Yes. We consider research on persons who are institutionalized, such as offenders or patients in any kind of residential treatment centre or mental health facility, to be more “vulnerable” because of the inherent constraints on their ability to make choices. Whether a choice to participate in research, by someone who is institutionalized, is “freely made” or voluntary is difficult at best, to assess. So, yes, it raises the bar in terms of all sorts of considerations — not just the volition aspect of consent &ndash but also how participants are compensated as well as what types of research can and should be done on what are essentially, captive subjects.

This research — and it is clearly research — is a worthwhile endeavour. But hopefully it wasn’t done at the expense of persons’ dignity and privacy or without consideration for the voluntary nature of participation, a right to which all participants, in all contexts, are due.

Just to clarify: I’m certainly not claiming that any of the researchers in this story did anything wrong, or that the research wasn’t properly vetted. But to a casual reader, what appears to besimply a fascinating advance in patient care actually raises noteworthy research ethics issues.

~ by Nancy Walton on February 2, 2009.

2 Responses to “Is Behaviour Tracking Minimally Invasive?”

  1. I just did a graduate paper on RFID in Healthcare and wrote the section on ethics, privacy, and security. We found there were several clinical trials on RFID after doing a search on clinicaltrials.gov. Hopefully they do have ethics approval. All the best.Michael J. Wilson

  2. Some professional journals require explicit discussion of IRB review for human research ethics for any articles they publish. I believe this was part of the publishers’ “Vancouver Agreement” of maybe 10+ years ago. http://www.icmje.org/

    Celia Walker

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