September 17, 2026

@michaelokun

What resonated with me from our DBS Think Tank session on the Ethics of Neuromodulation was the reminder that advancing technology also means advancing our responsibility to the people receiving it. Gabriel Lázaro-Muñoz from MGH challenged us to think about human fidelity as neurotechnology moves from carefully controlled studies into the real world, including what happens to patients over the lifetime of an implanted device. Joe Fins from Weill Cornell reminded us of the ethical problem of abandonment and of the power of listening to patients through qualitative interviews to understand benefits and risks that our traditional outcome scales may miss. Importantly, empirical work is also helping us move beyond the often-repeated fear that DBS fundamentally changes who a person is; patient studies have generally not supported a narrative of substantial adverse personality change and, in some cases, patients describe feeling closer to themselves again. Cynthia Kubu from Case and formerly Cleveland Clinic brought this home through years of empirical neuroethics research: we need to measure what matters to patients, follow their goals as they evolve, and examine autonomy, control, personality and quality of life rather than focusing only on motor scores. Finally, perhaps our greatest ethical challenge is that too many people who could benefit still never reach DBS. Maybe part of changing that begins with changing our language. “Deep brain stimulation” can sound frightening; “brain pacemaker” is simpler, more familiar and may better communicate what we are actually trying to do: use an implanted device to help restore function and improve lives. Thanks to Jen Purks from UF and Amanda Merner from MGH for sharing their preliminary data on how we should be approaching persons w/ disease and teaching us that "words matter."