Neuroethics Conversations: Guidelines for Care (Podcast)

As an undergraduate studying math and computer science, Paul Ford, PhD, had an interest in virtual reality. At that time, he says, engineers in the field seemed to be interested in technological issues and less so ethics, while the humanities scholars took the opposite approach.

That tension piqued his interest and ultimately led Dr. Ford to his current role as director of the Neuroethics Program at Cleveland Clinic’s Neurological Institute. In an interview with Glen Stevens, DO, PhD, on the latest episode of the Neuro Pathways Podcast, Dr. Ford explains how he became a medical ethics leader and, ultimately, a neuroethics specialist.

He came to Cleveland Clinic 25 years ago and rediscovered his interest in the neuroscience field after he received a call from the operating room.

“A neurosurgeon who was putting in a deep brain stimulator said, ‘Dr. Ford, I need your help. The patient's telling me to stop the surgery four hours into the surgery. What do I do?’ I said, ‘Well, you put him back to sleep, like he's supposed to be.’ He said, "No, no, no, you don't understand. It's this brain device stimulator and they have to be awake to help participate in the surgery by doing things.’

“And really from that time forward, I got involved in all things neurologic at Cleveland Clinic — psychiatry, neurology, neurosurgery — to help them with some of the really tough challenges in the neurosciences.”

In the podcast, Dr. Ford discusses neurologic realms that are particularly ripe for ethical considerations, such as the use of leading-edge neuro technologies; data collection; informed consent in the context of certain health conditions; and what and how much information to share with study participants about incidental findings of disease during research.

Click the podcast player above to listen to the 32-minute episode now, or read on for a short, edited excerpt.

Check out more Neuro Pathways episodes at
clevelandclinic.org/neuropodcast or wherever you get your podcasts.

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Podcast excerpt

Podcast host Glen Stevens, DO, PhD: So you've touched on this a little bit, but how should neuroethics guide the responsible implementation and evaluation of new treatments, so maybe even beyond what we're doing currently?

Paul Ford, PhD:The BRAIN Initiative in NIH convened a lot of neuroethics research over the last number of years. It came up with some guiding principles that have some use. There are eight of them. Safety is the very first thing: Make sure that these things that we're doing are safe, and “safe” includes those kind of off-target effects that we need to be looking for.

If we're looking at movement disorders, then we also need to make sure that it's not affecting depression or obsessions, or other kinds of things. We need to pay attention to these consent issues, the capacity, autonomy — how are these technologies altering that? And what's the whole picture of the person, not just the momentary expression?

We need to avoid malign uses, right? Realize that there's going to be dual uses for everything, and we need to be careful how we safeguard ourselves in that way.

Privacy is always a concern, neurodata, that's another principle. And in neurodata, particularly, if you have patients who are getting devices or other kinds of recordings that the neurodata is being stored, you want to make sure you advise them to know what's going to be done with that stored data.

You think about EEG. If there's mass amounts of EEG data being recorded, there are things we know, like seizures and other kinds of patterns, but I have the strong suspicion that we will be able to tell more about those patterns later, kind of like genetics. We do a whole genome and we don't know what the genes mean, by and large, but little by little, we're finding out that some of them have significance. Well, we have the masses of EEG data and other neuroimaging data that we may be able to reanalyze and find out things that we didn'tknow before.

So, we need to advise people that neural data may have more in it than what you think right now, so you need to know what's going to happen to it.