The Ethical Importance of Trust for a Patient’s Sense of Autonomy
By Ian Stevens
There is a rich medical history of deep-brain stimulation (DBS) devices, a kind of brain-computer interface (BCI) being used to treat Parkinson’s disease and other conditions (Kumar et al. 1998) and for a further reading see Garder 2013. Contemporary DBS devices are beginning to explore closed-loop stimulation (Widge, Malone, and Dougherty 2018). Closed-loop stimulation devices track the brain states of a patient and then they stimulate specific brain regions after a certain pathological neural state is recorded. These devices improve the stimulation efficiency and energy conservation of their predecessors, open-loop DBS devices, where stimulation would provide neural stimulation at a clinically set interval and intensity. For a thorough comparison of these devices see Ghasemi, Sahraee, and Mohammadi 2018. A noteworthy advantage of closed-loop DBS device over open-loop devices is their marginalization of psychological side effects that, in theory, increase a patient’s autonomy in life’s daily events.
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Image courtesy to Ryan Somma, Flickr |
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Image courtesy to Pixabay |
The paper by Gilbert et al. presented first-person narrative interviews describing the phenomenological experiences six patients had with their closed-loop advisory brain devices. The narratives from some of these patients are as follows:
[1]
Patient 02: Well as I got more and more confident, I didn’t question it, no. But initially when the algorithm was first put in, then I had very little confidence that it was going to be of any assistance. But then over time, I got more and more confident and so, yeah, I trusted it. (emphasis added) (Frederic Gilbert, O’brien, and Cook 2018)
Patient 06: The device took all of that insecurity away because now I’ve got to trust myself with that…I was more capable of making good decisions. (emphasis added)
Patient 06: The device took all of that insecurity away because now I’ve got to trust myself with that…I was more capable of making good decisions. (emphasis added)
[2]
Interviewer: Did you have a fit without a warning?
Patient 04: But a few times, yeah, so it did beep a few times as well. So yeah.
Interviewer: So with the device did you feel more confident for instance?
Patient 04: No I wasn’t trusting it….I just ignored it. (emphasis added)
Patient 04: But a few times, yeah, so it did beep a few times as well. So yeah.
Interviewer: So with the device did you feel more confident for instance?
Patient 04: No I wasn’t trusting it….I just ignored it. (emphasis added)
One interview suggests that to develop a patient’s SOA, trust must be established between them and the device. However, what ‘trusting a device’ explicitly means is vague. The author’s interpretation of ‘trusting a device’ is that for a device to be trusted, the advisory signals must be reliable. That is, the signals must be accurate in predicting the epileptic events. However, this interpretation of ‘trusting a device’ does not exclude the possibility that other kinds of trust, beyond reliability, are not necessary to enhance a patient’s SOA.
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Image courtesy to Terry Johnston, Wikimedia Commons |
Trust is conventionally understood as the act of a truster being vulnerable towards a trustee (McLeod 2015). Multiple definitions of trust have been proposed, and in a previous paper, I utilized the distinction between trust as reliability and trust as goodwill to advocate for privacy in brain recording technologies (Stevens 2018). This distinction rested on the need for the trustee to care for the truster beyond agreed upon professional expectations (i.e. regulatory procedures) and to also have their goodwill in mind (Baier 1986; Jones 1996). Understanding these different interpretations of trust in the research setting is useful for understanding what ‘trusting a device’ means for advisory brain devices.
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Image courtesy to Pixabay |
Research striving to make current closed-loop brain advisory devices accurate will likely resolve the distrust felt by most patients by utilizing the ethical concerns of the devices to shape their design. Contrastingly, on the human end of this human-computer interaction, there have already been recommendations to screen patients for a level psychological health that are comfortable in their vulnerabilities to then likely optimize trusting relationships with these devices (F. Gilbert et al. 2017). Thus, there is still room on both ends of the human-computer interaction spectrum for improvement as closed-loop devices develop and patient privacy becomes more vulnerable. More empirical research must be conducted as closed-loop devices progress. This research will best be accomplished by philosophers, clinicians, and neuroscientists collaborating to solve the ethical challenges posed by these novel BCI technologies.
________________
Ian is an undergraduate student at Northern Arizona
University. He is dual majoring in Biomedical Sciences and Philosophy with a
minor in Psychology to pursue neuroethical research surrounding the use of
neurotechnologies in medicine.
References
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- Gardner, John. 2013. “A History of Deep Brain Stimulation: Technological Innovation and the Role of Clinical Assessment Tools.” Social Studies of Science 43 (5): 707–28. https://doi.org/10.1177/0306312713483678.
- Ghasemi, P., T. Sahraee, and A. Mohammadi. 2018. “Closed- and Open-Loop Deep Brain Stimulation: Methods, Challenges, Current and Future Aspects.” Journal of Biomedical Physics & Engineering 8 (2): 209–16.
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Stevens, I. (2019). The Ethical Importance of Trust for a Patient’s Sense of Autonomy. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2019/01/the-ethical-importance-of-trust-for.html