Data, Data, Every Where, Nor Any Drop to Drink

Last Wednesday, I was part of a panel discussion at MIT’s Media Labs on Neuroethics with Alex HigueraAdam Eizenberg MolnarAna 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:

  1. 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.


  1. Very thought-provoking, as usual. As usual, I offer thoughts. I’d take that watch and throw it in the ocean. Ha ha. In general, I want less data not more. Most data is skewed. I wouldn’t trust any collected by corporations. Even patient collected data would be too noisy. Prefer three good comps like buying a house! But I want to live as much as possible by feel. It’s not perfect, but it’s the way I want to make my mistakes. Quantification is not necessarily a bad thing. But what we give up is almost always too much.

    1. Thanks Gavin. Too each our own I guess. I would say though, and I hope you don’t take this the wrong way, but it seems your fears of these big companies are grounded more in paranoia than anything real. Wondering if you could tell me more though about why you distrust these corporations so much? For me the issue isn’t trust, it is just that the people withing are heavily restricted in what they are able to do/not do but they do go to great lengths to try and build things that people find useful.

      1. Forgive me for retelling this story. The way I picked my DBS Device was the company I thought better served the world. I picked Abbott over Medtronic, which led to a great relationship and a lot of awareness for the Parkinson’s community and the marginalized in general from Abbott. Felt like we were really making a difference. When I checked back in about a year later Abbott had replaced managers throughout the department and any culture change that had occurred had been swept out in the interest of quarterly profits.

        There’s so much pressure from us, the shareholders, to squeeze out every dime they can. It’s the design of the system. But it’s also the designers of the system.Ultimately, we all are self interested. Even those of us that want the cure for Parkinson’s. We place that priority above anyone else’s cure priority. It’s this type of bias that people are so conditioned to. The same news here in the US Is interpreted two completely different ways! I think you will admit that people see things as they want to see them. Within any corporation there are a lot of well-intentioned people. Maybe all of them even. But telling things like they are would likely cost them sales. They would likely lose their job.

        We almost all make decisions that are best for ourselves. That skews the way we view and report everything.

        I would use the same criteria for selecting my DBS if given the opportunity again.I will never stop believing we can improve but there’s no evidence to suggest we’re anywhere near where we can be!

  2. Thanks for sharing this Ben – it’s wonderful to get your tale-aways from the panel. Also: really cool to see the little impromptu experiment you set up with Neurable ealrearlier that day too 🙂

    1. Thank you Diana for hosting an incredible event last week. Really inspiring discussions. Can’t wait to be able to share those as well with the world 😉

  3. Small point: Having chaired IRBs myself, I don’t think that letting a patient play around with a device already FDA-approved (or other regulatory-body approved body relevant to a particular country) as relatively safe would have anything to do with an IRB at all. IRBs are concerned about research defined as ” a systematic investigation, including research development, testing and evaluation, designed to develop or contribute to GENERALIZABLE knowledge.” A single individual playing around with a device? None of the IRB’s business.

    IRBs frequently have patients join IRB boards as special reviewers for consideration of particularly complex or risky trials. They always have a “community representative” , at least in the US.

  4. I admire your bold pronouncements. I look at the plethora of genetic testing and wish for the opportunity to pore over my individual results. I am thankful to the PD gene study I participated in for the negative results I shared with my relatives. Testing was limited to major PD genes, but ‘there is gold in them thar hills.’ It would be nice to have the raw results back, though distribution to volunteers would not be easily accomplished securely I imagine. I don’t know what extent an FDA’s Institutional Review Board had in reviewing a study I inquired about but did not join, I credit the nurse screening applicants for (whispering) the word dyskinesia and my Neurologist for ignoring me, for giving me the message. The study I did not join was later halted by the FDA. It will always be individuals providing individuals the information needed, if we listen closely.

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