Last Wednesday, I was part of a panel discussion at MIT’s Media Labs on Neuroethics with Alex Higuera, Adam Eizenberg Molnar, Ana Maiques, Dr. Rachel Conrad, M.D. and Dr. Anna Wexler. We had a great discussion, which you can watch below, on some of the ethical implications surrounding some of the newest brain technologies being developed (like my own adaptive deep brain stimulator.)
While I thought the discussion we had was good, there were a couple questions I regret not raising. Namely these:
- What kind of Data should patients be allowed to see prior to agreeing to have anything surgically implanted into themselves?
I’ll take DBS as my example because it is the one that I know best but I am sure the same is true of many other technologies.
There are three main device manufacturers on the DBS market: Medtronic, Boston Scientific and Abbvie. Combined they have implanted over 200,000 devices into people world wide since DBS was approved by the FDA in 1998, and they own the data regarding outcomes on each of their implants. So why is there no easily accessible repository of all that information for patients or their families to query? After all, not only does each device have slightly different outcomes, but so do each center and each surgeon. Do patients not have the right to access that kind of data? If you were a patient, wouldn’t you want to know the answers to those questions?
Well, it is not that easy. That data is owned by the three large companies mentioned above, what incentives do they have to share that information in a world where they are not legally obligated to and where that data could hinder their ability to increase market cap and market penetration?
Sadly, it seems as if the onus for getting this kind of data out into the world is on the one group of stakeholders who already have the most to deal with, patients. Alas, that is the world we live in. Until patients start demanding more data we will likely never get there.
2. Is all Data the same?
I don’t mean to belittle any of my fellow panelists, but there is one thing that Adam Molnar said that irked me a bit when he said that neuroethics is primarily a data problem.
Now, I get that the device him and his team at Neurable is creating is different than most of the technologies we discussed. Theirs is a consumer product aimed at improving the way each of us focus, sleep and (possibly) much more, but still it is hard for me to see how we as a society can ethically go forward if we try to lump all these different kinds of data problems together.
And, after all, it looks as if this device may indeed have some medical applications sooner than even their founders envisaged…
3. Do we really need ethicists to be part of every trial?
I do need to commend Adam for not only getting me invited to the panel session above, but also for something which he allowed me and his team at Neurable to do earlier that same day. About six months prior to, Adam and I talked briefly about the possibility of using his team’s headphones to detect fluctuations in my own beta waves. At the time we both kind of laughed it off, thinking there was no way that something worn outside the skull could detect any kind of activity happening so deep within the human brain.
Well, I’m happy to report that it looks like we were completely wrong. Not only could the device, which him and his team have worked on for years, pick up on the differences between the On/Off states of my DBS, but it even was able to recognize the slight changes between the adaptive and continuous settings.
The possible implications of this for the future of DBS are pretty profound. If I were running Medtronic or Boston Scientific or Abbvie I’d be knocking on Adam’s door post-haste. But, like all things, seeing is believing. So…
Coming back to the question posed above, it does lead me to think about clinical trials and all the ethics/IRB boards that often gum up the system and slow things down for patients like myself. They claim to act on the behalf of patients like me, yet employ none of us on their committees. How much more good could we be doing today, if from time to time, after an intervention is deemed relatively safe, they stepped aside and just let people try things?
There is a lot more that I could say here and a ton of other such provocative questions to ask, but my Apple Watch just alerted me that just writing this column is increasing my heart rate, time to stop what I’m doing and stare off into the void, I guess?
For those wondering where the title for this post came from, I cannot recommend strongly enough picking up a copy of Samuel Taylor Coleridge’s The Rime of the Ancient Mariner. Particularly the version illustrated by Gustave Dore above…
Or for those so inclined, listen to this interpretation from Iron Maiden…
Shout outs as well to all the dreamers at Camp Shomria. Had I never gone there, and met Adam’s older brother Eric over 20 years ago, none of the above would have ever happened. Chazak Ve’ematz.