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The Current Transcript for July 12, 2017

Host: Mike Finnerty

STORIES FROM THIS EPISODE

Listen to the full episode

Prologue

[Music: Theme]

SOUNDCLIP

Successful commissions bring Canadians with them as they go and this has not been done today.

MIKE FINNERTY: So much hope has been invested in Canada’s commission looking into missing and murdered indigenous women and girls. Now so much heartbreak as it stumbles with another resignation and this time a commissioner. Can the inquiry pick itself up, learn from its mistakes and win over the confidence of the families of the missing and murdered. Coming up, we talked to two family members about the path forward. Also today are you ready to strap yourself in and let a machine read your mind?

SOUNDCLIP

So in today's meditation like every new session you're going to hear the sound of your mind while you meditate. When your mind wanders, you're going to hear the weather pick up [Sound: Wind]. And as you come back to focus attention you're going to quiet the weather [Sound: Wind and running water].

MF: The new commercial products that read brain activity with the potential to redefine what our brains do. I am Mike Finnerty Welcome to the summer edition of The Current.

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'There's a lot of disrespect': Families want all MMIWG inquiry commissioners to resign

Guests: Lorelei Williams, Beverly Jacobs

SOUNDCLIP

Yesterday I met with the commission to discuss the concerns I've heard and their plan to fulfill their mandate, in light of the resignation. We had a very productive meeting and I can assure families the commissioners continue to be passionate about their work and are dedicated to finding the solutions to end the violence against indigenous women and girls.

MF: It is a central commitment from the Liberal Government to indigenous Canadians, but the national inquiry into missing and murdered indigenous women and girls is in trouble. Yesterday Carolyn Bennett the minister of indigenous and Northern Affairs faced reporters questions over the latest high profile resignation from the inquiry. She is Marilyn Poitras a University of Saskatchewan Law professor of Metis dissent and she resigned from her post as a commissioner yesterday. In her letter to Prime Minister Justin Trudeau She wrote “It was clear to me that I am unable to perform my duties as a commissioner with the process in its current structure”. Five other staffers have resigned from the inquiry in recent months, including its executive director Michele Moreau. After Marilyn Poitras’s resignation, the Ontario native Women's Association which had intervenor status at the inquiry, sent an open letter to commissioners saying it could not support the format and approach. Some indigenous leaders are calling for a restart. This is Sheila North Wilson the Grand Chief of Northern Manitoba First Nations speaking on CBC's As It Happens.

SOUNDCLIP

SHEILA NORTH WILSON: There is a lot of internal turmoil that's not being addressed and there's clearly a lack of leadership that is hindering the process and Grassroots people themselves who were not consulted. So, those are huge problem. I think we need a new lead commissioner. The one that is chosen and at least you know spoken for or endorsed by Grassroots people the ones that brought this to a national election level and the ones that fought for the last 30 years to get to the point where we are. So, I think we need to see the restart whether there's delays or not it's there's too many things at stake for it to fail.

MF: Meanwhile many families of the missing and murdered women and girls say they're losing their faith in the process. To help us understand how families are feeling about these developments, we're joined by two guests; Lorelei Williams has two family members among the murdered and missing. Her cousin Tanya Holyk DNA was found on Robert Pickton farm and her aunt Belinda Williams has been missing since 1978. Lorelei Williams joins us from Vancouver. Lorelei, hello.

LORELEI WILLIAMS: Hi.

MF: And Beverly Jacobs is a Mohawk Nation Haudenosaunee lawyer and an assistant professor at the University of Windsor and she's the past president of the Native Women's Association of Canada. She's also an advocate for families of missing and murdered indigenous women and girls, and she joins us from Six Nations of the Grande River territory. And Beverly, hello to you.

BEVERLY JACOBS: Hi good morning.

MF: Beverly you met the minister Carolyn Bennett last night to speak about this. What can you tell us about it?

BEVERLY JACOBS: Well, I can tell you that it was a group of the family said actually signed on to the open letter to the Chief Commissioner. It was an open letter that was actually signed by many many people. And so the purpose of the meeting was for… Actually the families had met with the commissioners earlier in the day yesterday, and then the meeting with the minister was to advise her of the results of how the families felt, even after that meeting.

MF: What was the tone like?

BEVERLY JACOBS: Well the tone I think was frustration, disappointment, a lot of families felt that there's a lot of disrespect towards toward their voice. And so they had actually had said there was every member, every participant at that meeting… Yesterday we had a circle and everybody talked and expressed their concerns to the minister and said, basically every single one said they want every commissioner to resign. They want resignations from every one of the commissioners.

MF: I mean that seems like a drastic step, no?

BEVERLY JACOBS: It's a drastic step, definitely. But there's no trust. And that worries me. It worries everyone about being able to participate in a dysfunctional process and shedding their trauma, sharing their pain and how do you do that if there is no trust?

MF: And were you one of those, Beverly, who told the minister that you want every commissioner to submit their resignation?

BEVERLY JACOBS: Yes.

MF: Lorelei, when you hear that, how do you respond?

LORELEI WILLIAMS: Yesterday when I found out she resigned I wasn't upset at first like I was with the other resignations. I was more confused because I was having mixed feelings about it because I was kind of thinking there's something going on inside there that I don't know about, with the recent resignations, and I feel like that that confirmed it because she's the commissioner and it kind of confirmed those feelings that I had that something's not going right inside of their.

MF: Do you share the view that you heard Beverly say there that's all the commissioners in the circumstances should resign and have a restart. Is that something you think would be useful?

LORELEI WILLIAMS: Before yesterday, no. And now I am thinking about it. I am going back and forth with it and I've been going back and forth throughout this whole inquiry. There's just… I had a lot of hope in the beginning. I lost it. I gained it back when I was in White Horse. I lost it with the recent resignations. I was slowly gaining it back after I was after the recent press conference with Marilyn or Marion just the other day, and I was like okay she answered some of my questions but now I know with Marilyn's resignation I knew something was going wrong in there.

MF: Beverly when you and the others who were at the meeting last night with the minister made your call for all of the commission now to resign, what was their response?

BEVERLY JACOBS: Well, the minister had said you know that she wanted to basically take on what everybody has said and as she listened. I mean she's at least had a lot of respect towards the families who were there, and basically she didn't give a response. She didn't say yes or no or you know or give any kind of indication of what her response was going to be. But my gut instinct is that nothing's going to change. And so that worries me. It worries me with respect to the next steps in the process and how to ensure if families are participating that they are provided the resources during and after the inquiry process. There is part of that difficulty with the process is that they don't have legal representation, so they themselves cannot answer or ask questions during the inquiry which I think is very, again, really disrespectful towards them, because they have solutions and they have been through the process. They've experienced the loss and the trauma and the systemic problems with the justice system and with policing and with the lack of resources. So I think part of part of it is then to determine what the next steps will be, depending on what the response is going to be from the minister, if anything.

MF: If they were, all of the commissioners to resign, as you've called for, what would happen? How would that work?

BEVERLY JACOBS: Well I think it would… It's an example of what happened with the Truth and Reconciliation Commission. All of the commissioners had left. The three original Truth and Reconciliation Commission which was headed up by Judge Harry LaForme. And there were new commissioners who started, and it worked well. And in fact I know that the Truth And Reconciliation commissioners and their leadership and their new leadership was able to obtain a respect of the public and of the survivors and able to ensure that their voices are being heard. So that's what needs to be done as soon as possible.

MF: I'd like you to listen to some of what Marion Buller, the chief commissioner had to say on CBC's power and politics.

SOUNDCLIP

MARION BULLER: I want to assure all Canadians that we are prepared to move forward as we have scheduled and as we have planned to hear from families and survivors. We want to hear if their stories. We want to be able to talk to them about their recommendations as well. We want to continue doing our work and we will continue to do our work in a trauma informed and culturally appropriate manner.

MF: Marion Buller, speaking yesterday. Lorelei, does she have your confidence?

LORELEI WILLIAMS: She did and I'm losing it again. She did. She gained it a few days ago when she did that press conference, she gained it back, but now I'm losing it again.

MF: What did she do to win you over again at the news conference?

LORELEI WILLIAMS: Well, I had wondered why there were so many resignations, and she said that they were going on to better jobs, but there was something that made me not believe that. There was just something there, but I was like “Okay, I gotta trust this”. I got closer to her up in Whitehorse. And so I wanted to be able to trust her. It's really hard for me to trust the government, but I feel like she has been genuine. I thought that. And so when she said that you see at UBC at that press conference I was like “Okay, I have to trust this”, but I'm hearing a lot of things now in the community. And now this. So I'm so confused I don't know what's going on in there and I'm losing it again. I'm losing that trust. I am losing that faith and hope.

MF: You were at the hearing in Whitehorse.

LORELEI WILLIAMS: Yes.

MF: And I guess you know that is a crucial test of how the inquiry will play out. What was your feeling? What was your impression of how it actually functioned there?

LORELEI WILLIAMS: It was good. I had so many concerns I had so many questions when I was down here in Vancouver just before I went up, and when I was there I was able to get a majority of my questions answered. I got to get closer to the commissioners and the staff. There were points when I was sitting with them one on one outside of the inquiry, because it was hard for me to actually sit there and listen to all of the family stories so I would just sit outside of the inquiry. And that's where I got to meet with them one on one just sitting there because they some of them would be, the staff would be around walking around. You know when the commissioners were on their breaks or during the dinner I was able to sit with them and talk to them and address my concerns and Michele Moreau role actually approached me at the inquiry. I had no idea who she was but she approached me and she said she wanted to hear from me. And she gave me her business card and she said she wanted to connect with me and she also wanted a letter from me about the concerns I had.

MF: Beverly, could I try asking you a question that is simple on the surface but I know complicated?The vast majority of people listening to you now they want the inquiry to work they want it to meet the needs of the families and they want it to get results. And for most people who follow it less closely than you are they're just not clear. They don't understand what it is that's not working. And I wonder if you could explain from your heart clearly what's wrong?

BEVERLY JACOBS: Well I think just in responding to what Marion Buller said was that it is a trauma informed and culturally based process and I would have to argue that it's not, because when you have a trauma informed process you would have a built in process to ensure that trauma does not occur again or any more and that families are feeling empowered, they're feeling supported, they're feeling loved, and that's not happening. Part of part of the difficulty with this inquiry, as well, is it a very colonial model. You know it's top down process and that's not how we work as indigenous people, is not on that part of the problem with colonialism and with colonial institutions, that it's not respecting Indigenous law, indigenous legal processes, which is what being culturally safe means.

MF: What would that look like? What a model for the inquiry that's rooted in Indigenous law and traditions, what would that look like?

BEVERLY JACOBS: I mean first is in the language, and depending whether or not families are… You know most families are impacted by colonialism, by the residential school and that's part of the root of the problem is that the language has been impacted. But there are many families who speak their language. And so is that part of the process? Do they have interpreters? Can they enable families to speak very clearly in their language and to be able to have elders they respect and that are part of the process? Do they have the support, people that are around them to ensure that… You know we're talking about death. We're talking about spirits of these women and there are certain protocols and certain processes that are in place when we talk about people who are already passed on, we talk about our ancestors, that there are certain even times of the year that you talk about these things, in different cultures, right? In different nations. We're not just one indigenous people. We're all different indigenous nations, different languages, different practices, different ceremonies and so I have not seen any of that built in to this process and so that's what's key to this.

MF: Lorelei, does that speak to? Does that change that way of working? Does that sound right to you as well?

LORELEI WILLIAMS: Yes. And that's actually something I noticed in Whitehorse was that when I went to the ceremony room or this much room that they had set up there, there was nobody in the room and I was actually shocked to see that. There was a box with smudge, tobacco and all that stuff. But there was nobody there. You know I've been to quite a few conferences or meetings across this country and for the missing and murdered indigenous women and girls’ families, and there's always elders there. There's always people there doing ceremony. So when trauma comes up, it will come up it always comes up when they feel overwhelmed, they can go to those elders. They can go into a ceremony to ground them and I didn't see that up there and that was one of the things I was going to address to Michele Moreau because, you know when you're wandering away, when you're upset they do have people to run after you and talk with you. But we need that ceremony. You know it's hard to do those ceremonies on your own. That's one huge thing that I saw up there.

MF: Lorelei and Beverly, thank you so much for speaking to us this morning. Really appreciate your time.

BEVERLY JACOBS: Thank you.

LORELEI WILLIAMS: Thank you.

MF: Lorelei Williams who has had two family members among the murdered and missing. She joined us from Vancouver. And Beverly Jacobs who is a lawyer, past President of the Native Women's Association of Canada and an advocate for families of missing and murdered indigenous women and girls. She joined us from Six Nations of the Grande River territory. We requested interviews from Carolyn Bennett the minister and a representative from the inquiry. Neither was available. The CBC News is next. And you're listening to the summer edition of The Current.

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ENCORE | How brain-machine connections can help paraplegics move again

Guests: Karen Rommelfanger, Miguel Nicolelis

MF: Hello Mike Finnerty. You're listening to the summer edition of The Current.

[Music: Theme]

MF: We live in a connected world. How connected is too connected?

SOUNDCLIP

So everyone to take a moment and slip on your muse. We're going to choose a two minute long session and any sound environment you want. So in today's meditation like every muse session you're going to hear the sound of your mind while you meditate. When your mind wanders you're going to hear the weather[Sound: Wind]. And as you come back to focus attention you're going to quiet the weather[Sound: Wind and running water]. Just pay attention to the breath coming in and out. Right at the tip of your nose. When you're ready, you can press begin.

MF: Are you ready to press begin on technologies such as that, that seems to get right into your head. The Muse as it's called, is a headband that reads your mind, or your brain activity at least. Its sensors measure the electrical activity in your brain and send that data to your smartphone. We dropped in on a group meditation session with employees of Interac on the Toronto company that manufactures the device.

SOUNDCLIP

VOICE 1: You can open your eyes and take a look at your data, how is that for you, what came up?

VOICE 2: I feel very calm and I actually did really well, I got 18 birds, so it was very successful today.

ARIEL GARTEN: Hi my name is Ariel Garten, I'm one of the co-founders of Interaxon. We make Muse, the brain sensing headband. So what Muse does is it helps you meditate. It helps you actually hear the sound of your own mind during your meditation, and the metaphor we use is your mind is like the weather. So when you're thinking, distracted, worried, you hear your brain as windy [Sound: Wind blowing]. And as you come to a state of clear focused attention, you quiet the winds. When you're very very quiet you hear birds [Sound: Chirping birds and running water]. So Muse is a clinical grade EEG with sensors on the forehead and behind the ears. So what we’re reading is your brainwaves, and it's used by over 120 different research institutions. So it's now this slim, slick, really beautiful little device that you can slip on your head and do real neuroscience research with, or you can walk into a Best Buy and pick up next to the Fitbit, or the heart rate monitor, or any of the other standard wearables that you have.[Sound: Breathing] So our mind is a very mysterious place. Our brain, you know, governs our entire experience of life. What we think, what we feel, what we hear, what we smell. But we have really no mechanism to access it. So we wanted to make a tool that absolutely anybody could use. That could help them actually interact with their mind. And so what we see is your active mind. We don't specifically see if you have a negative thought, but we teach you to know when you're in that place where you're, you know, stuck in your head and that's not so productive, and what you can do to come out of it and come back into the present moment. You can learn not to engage in the thoughts of, oh no what if, you actually end up living a very happy, very pleasant life.

MF: Commercial products that read brain activity such as the Muse are proliferating on the market. It's even possible to play virtual games using only your brain signals. But compared with what's happening in lab research, that is really just the tip of the iceberg. There are labs connecting human brains together via computer and they've already accomplished a feat that's hard to wrap your mind around. Having one person's brain move another person's body, albeit in very small ways. As to where that's leading, some envision a brain net that's like a series of brains, human or animal, all connected and working together. Any and all of these avenues of research have the potential to redefine what our brains do and to disrupt the idea of where I ends and you begins. The Current explored the promise and the perils of this new technology in September as part of its season long project The Disruptors. Miguel Nicolelis is a Professor of Neuroscience at Duke University. Who also runs a lab in Sao Paulo, Brazil. And his latest research paper looks at connecting paralyzed patients to machines to rewire their brains and help them move again. Miguel Nicolelis by the way, has no connection to the company we just heard about, or any other company. Here's his conversation with Anna Maria.

ANNA MARIA TREMONTI: Can you describe your study with paralyzed patients?

DR. MIGUEL NICOLELIS : Well, this is the first clinical application in a large scale of an idea that we pioneered in 1998 at Duke University of creating what we call brain machine interfaces. These are computational interfaces that allow brain activity to be routed directly to virtual, mechanical or electronic devices so that the subject who is generating this brain activity can move this device just by thinking. The study we just published showed that when you have a population of chronic paraplegic patients, someone who had not walked for more than a decade in some cases, you can use brain machine interfaces not only to restore mobility through artificial devices like robotic exoskeletons, but you can also trigger a partial neurological recovery of functions, motor, sensory, visceral in these patients.

AMT: So you had eight paralyzed patients, am I correct?

DR. MIGUEL NICOLELIS : Yes, correct.

AMT: So their brains were connected to the machines, what did they have to do?

DR. MIGUEL NICOLELIS : Well this is what we call a non-invasive brain machine interface. So they have to wear like a swim cap in which we had tiny electrodes that can record from the surface of the scalp, electrical brain activity. The patients had to learn how to use this brain activity to control a variety of motor actuators. We started with an avatar body of themselves where they trained, and then as they became proficient with the system we basically got them into robotic walkers. So they learned to walk again by literally imagining that they wanted to move and sending this voluntary motor desire to a machine that could enact that will.

AMT: So they weren't able to walk on their own, but with the help of the exoskeleton or they were able to move their limbs with their brains?

DR. MIGUEL NICOLELIS : Well, some of these patients actually recovered the ability to voluntarily move their limbs without the brain machine interface. They couldn't sustain their body, but when you have them up right and you give them body support, they actually some of them could move both of their legs. After two and a half years of training, at this very moment now, all these patients are being upgraded from complete paralysis to partial paraplegic.

AMT: That sounds extraordinary. It's a small group, what does it mean?

DR. MIGUEL NICOLELIS : Well, it’s a proof of concept. And is something that nobody had seen, even in small groups after a year and a half, the chances of a spontaneous recovery or rehab induced recovery is very slim. And yet, we are talking about patients that were paralyzed for 11, 13 years and they recover significant amounts of movement and sensitivity.

AMT: Now how do you know it was the brain machine connection and not hours of physical therapy and training that changed the brains and allowed that movement?

DR. MIGUEL NICOLELIS : A lot of people have done hours and hours of physical therapy and never shown any recovery. Our patients themselves have done hours and hours and years of physical rehabilitation and never shown any type of recovery.

AMT: And now, you're also working to connect patient brains via computers to healthy human brains. Can you tell me about that?

DR. MIGUEL NICOLELIS : Well, that's a very preliminary study that is based mainly on animal studies that we did at Duke University, when we connected two or three monkey brains and the animals collaborate mentally to move a virtual reality arm. So they had to actually combine or synchronize their brain activity to achieve a common task. We realized that perhaps we could adapt this brain net paradigm to training of quadriplegic patients, and that's what we're doing here in Sao Paulo, because we know that in the beginning of the training, particularly in patients who have been paralyzed for a decade or more, and in which the brain is literally erasing or forgetting what is to walk and what is to have lower limbs. And the patient has to control these avatar to walk on a soccer field, and at the end of a walk, kick a soccer ball. That's the exercise, the virtual exercise that they have to learn. And all these movements have to be controlled by brain electrical activity. Now what we're doing is to combine the brain activity of the patient with a contribution from a physical therapist. So the physical therapist is also imagining to move that avatar. In the beginning and the physical therapist contributes more than the patient, and as the patient starts learning what has to be done, their contribution goes down down down, to a point in which only the patient controls the avatar.

AMT: What excites you about all of this?

DR. MIGUEL NICOLELIS : Brain is the greatest mystery of the universe, as far as we can tell, because it defines our human condition. The greatest endowment that we ever got from natural selection. And technology here is just a detail, it’s just experimental tool. But it turned out that once you connect a brain to a machine, and the brain maintains control of what can be done with technology, this is different from, you know, everything that we see around us in society out there in which technology is taking over humanity. And people think that all our problems are going to be solved by introducing technology, that's not what I'm talking about here. What I'm talking about here is use technology to help us understand better how the human brain works. What people don't realize is that we are not talking about not even in the distant future, of downloading someone's thoughts, emotions, memories, and passing that to another subject, that in my opinion is very unlikely to happen ever.

AMT: OK, well I'm glad you brought that up because I've got a clip here that I want you to respond to. This is the CEO of Facebook Mark Zuckerberg. He has spoken on several occasions about his interest in brain connection technology. Listen to him in a Facebook live question and answer session that took place in June.

SOUNDCLIP

MARK ZUCKERBERG: You know what I think we're going to get to at the end of the line past VR, is a world where I think you're going to be able to just be able to capture a thought, right? What you're thinking or feeling. In it's kind of ideal and perfect form in your head and be able to share that with the world in a format where they can get that. There are all these ethical questions about how you do that well, and how you give people power so they can do this in a way that they want. But I think it's something that, you know, 50 years from now may not be a crazy thing to think about.

AMT: Miguel Nicolelis, how do you see it?

DR. MIGUEL NICOLELIS : You know, he may be a very good salesman for Facebook but I don't think he knows much of neuroscience to make that claim. In fact, that claim may scare a lot of people. I don't think we can even talk about that now, because we don't even know how to define a thought, let alone our emotions or our memories. We can transmit motor information, simple motor information, some sensory information, but above that the kind of processing that goes on in our brain is beyond the capability of the typical digital machines that we know, computers.

AMT: Well, and he mentioned ethical questions around brain connecting technology. What moral quandaries do you consider when doing this research?

DR. MIGUEL NICOLELIS : Well, 99 per cent of the time I'm doing this research with rats and monkeys, so I think there are too many moral questions at that point, provided that the animals are cared for and are very well treated, as they are. Of course, I'm writing a whole book about the brain and how modern society may be tampering and influencing the way we think and the way our brain evolves. So I think about that all the time. And I also think about what would happen when these technologies that we are creating in the lab get out on the streets. But again all the debates I had participated in with neuroethicists and other philosophers, and people who think deeply about these, I think in all these debates we've got a consensus that as long as you are doing this for medical reasons and you’re doing this to explore potential therapies, there are no ethical qualms on it.

AMT: Do you worry about commercial ventures wanting to leap onto the research you do for those medical purposes and commercialize it for, like, to do something with it that you didn't intend?

DR. MIGUEL NICOLELIS : Oh, absolutely. In 2004, we already had a proof of concept in humans, the brain machine interfaces would work. Months later, there were companies popping up in the United States trying to rush this technology into, you know, to make money. And that damaged not only the field, it damaged the investors or the company. And he almost destroyed the whole dream of using brain machine interfaces to help patients. So when I see companies claiming all sorts of things, I cringe because I know that this is not where we started this field for. And I also, just to finish, I am very concerned about the potential military use of this technology. Weaponizing the brain is not a good idea in my opinion, and it could be terrifying. In the beginning of the 2000s there was a movement to help the veterans to regain mobility and I participated in an effort to do that. There was initial intent to use these for medical purposes. And the moment we depart from that line, certainly is not for me, I'm out of it. And I would urge anybody in this field to be out of it too.

AMT: Can I just clarify why when you say weaponize the brain, how would you even do that? The weaponzing.

DR. MIGUEL NICOLELIS : Well we used to brain machine interfaces to control weapons.

AMT: Okay.

DR. MIGUEL NICOLELIS : To increase the range, lethality and the scope of what to be done. And that's an ethical concern.

AMT: Miguel Nicolelis, it's really interesting to talk to you. Thank you for taking the time.

DR. MIGUEL NICOLELIS : My pleasure. Thank you.

AMT: Miguel Nicolelis, Professor of Neuroscience at Duke University. He also runs a lab in Sao Paulo, Brazil. That is where we reached him. Well, when we talk about disrupting the way we use our brains with these emerging technologies, there is clearly a lot of promise. But as you just heard there, the ethical questions around these disruptions are especially important. Karen Rommelfanger is a Neuroscientist, a Neuroethicist and Director of the Neuroethics program at Emory University. She's also part of the neuroethics working group of the US government's brain initiative, looking at the ethics of brain research. And she joins us from Atlanta, Georgia. Hello.

KAREN ROMMELFANGER: Hello.

AMT: Well, you've been listening in and we're talking about Miguel Nicolelis, his predictions and the promise of brain connecting technology. Where do you see this technology going?

KAREN ROMMELFANGER: There are a number of issues, I mean, within his particular domain, I think it's really interesting to think about particularly in the brain net situation, where he's talked about a healthy brain rehabilitating a brain of a person who's been paralyzed for a long time. There are two parties involved in that situation. And while we talk about the benefits of rehabilitating the person with the paralysis and increasing their neuroplasticity, we don't really know what happens to the healthy person in that situation. I mean, it assumes that this is a shared activity that somehow only impacting one brain. And I don't see how that could be possible. In some of the studies with brain to brain interface, there's some interesting questions too, about how, while it seems innocuous, this is a non-invasive device two brains, so far for the brain to brain interface, have just been connecting to play a game for instance. We don't know how the people who participate in those studies leave that situation. Do they feel a certain kind of selfhood that's been changed? Are there reverberating effects for them that last beyond the experiment? And I say that because we already know with virtual reality, that people who participate in virtual reality games can change their behaviours in the real world even after performing in virtual reality.

AMT: Well earlier we heard about the Muse headband and from Ariel Garten, co-founder of Interaxon, the company that makes it. She has also founded the Center for Responsible Brainwave Technologies to develop ethical standards for consumer brain connecting devices. Listen to her, she's explaining here what she wants companies to consider as they sell such products.

SOUNDCLIP

For us it’s important that your privacy is yours and you always get to choose what you do with your brain data and what you don't. It's important when you go to create any piece of technology, you want to make sure that the applications that are being built are very well validated, that if you say that it's doing something it really is, that you've had, you know, its efficacy demonstrated by scientific partners that are outside of yourselves. I get frustrated when people get excited about technology for technology's sake like, oh we can do this really cool thing. It's like, that's great, technology is an amazing enabler for humanity and our human experience and enhancing it in all sorts of ways, but we can't lose sight that the important thing is the human not the technology.

AMT: Karen Rommelfanger, what kinds of issues do you think the Center for Responsible Brainwave Technologies needs to look at when developing ethical standards?

KAREN ROMMELFANGER: Yeah, I'm familiar with the privacy policies of Muse and I think they actually are leaders in their special care and attention to data privacy. I think that's critical actually, and the two things she offers is not only that they will protect the information, but you as a participant or a consumer can own your information, and at any point you can take that information back and stop participating.

AMT: What's the danger there. If you don't own your information, who might?

KAREN ROMMELFANGER: That's a good question. I mean, it could be her company or it could be if the company tanks whoever buys the company next. And so, the problem is that it seems like right now it's just a fun biofeedback game. And maybe it is, it's a wellness tool. But in the long term we're developing more and more technologies that record more and more fine grained information about the brain and our analysis tools are becoming better, and that could be used in ways one may not want to be used. So they could be something that ends up being incorporated somehow in a medical record, or in a record that is accessible to future employers. Many of these wearable headsets are consumer technologies that are used for wellness aren't technically health. That said, the hope is that maybe they will help you with your health in some way. And some of these technologies may even be able to detect symptoms prior to a disease's’ onset. Right now in the US, we have a rule that you can't prevent someone from getting insurance because of a pre-existing condition. But we actually don't have rules against a pre-existing pre-existing condition, something prior to that.

AMT: Really interesting. So also we think of our mind as a defining feature of our very self. How much do the mind and the physical organ of the brain intersect in this sense?

KAREN ROMMELFANGER: We don't really know what the mind is. We certainly can't really define that with a neuro scientific tool. I also say this from my experience as a neuroscientist, recording at the most granular level of individual cells in an alive brain, that during that recording it was very apparent to me that this is not where a thought is and this is not the mind. Mind is really a social construction and the definition of that differs across countries. In Western countries, you hear this discussion of the individual and that somehow is equated to the mind. But in other cultures, their defining terms are even different. So in Japan there's a term kokoro, and that's really the interweaving of the mind, body, and spirit. You wouldn't separate those things.

AMT: Devices such as Muse connect our brains to computers. But if we go to the next level and connect our brains to other brains, what could that do to our concept of self?

KAREN ROMMELFANGER: The good question there is how is that actually different than the way we connect to other brains now? So you and I are right now we're having this conversation and this conversation is changing my brain. So we already have actually an indirect connection, and I'm not sure that right now at least, connecting two brains is really going to be more effective than the way we talk to each other now. What I worry about is that with this focus of changing our brain and worrying about how we might gain control of our brain just to have more happiness, a better life, more connectedness with others, is that we lose out on other ways that we can become more connected with others in the world. Turn inward to be more connected with the world kind of seems like it's the opposite of what we should be doing.

AMT: And Professor Nicolelis’ work also found that brains actually changed when connected to machines. What are the implications of that?

KAREN ROMMELFANGER: In situation with brain machine interface, the thought is perhaps that these technologies are enabling people, certainly people who are paralyzed. What I wouldn't want to forget is that disability exists in two different places. I mean, we could say that disability is within the physical body, but a lot of the way that disability is lived is facilitated by the environments around us. So the question is if you're in a wheelchair, for example, and you're in a place with no stairs, are you as disabled? We forget that there are ways to change our environment and our social infrastructure to support those who are disabled. So I wouldn't want to start going to the point where we think that we can't help facilitate people to be who they are without a device.

AMT: Important to think about it. And I wanted to ask you about the idea of a brain net or that organic computer. Who would be held responsible if a brain net, a group mind makes a bad decision?

KAREN ROMMELFANGER: [chuckles] That's a really good question and I think it wouldn't be clear. Is the technology going to remain a tool for us? Is it going to turn into a tool that helps us realize ourselves? Or does it become a collaborator in the end? And are there going to be interventions or abilities in place with these technologies so that we can be aware of all times what's happening, or we can intervene if something is going to happen that we don't want to. So let’s say a group of brains are working together to try to decide on a target. And one of them decides on the wrong target. Is there a way, still in that process, that one person can prevent the target from being shot, for instance?

AMT: Why do you think so many are so fascinated by communicating directly through our brains, rather than talking to each other?

KAREN ROMMELFANGER: There is a certain novelty to it. We are social beings and we want to be connected. And I think we all struggle to be connected and these technologies present a new exciting way to do that. And I think the idea of being able to touch somebody really far away, touch someone's thoughts far away is an exciting appeal.

AMT: Karen Rommelfanger, thanks for your thoughts on all of this.

KAREN ROMMELFANGER: Happy to be here.

MF: Karen Rommelfanger talking to Anna Maria Tremonti in September. Karen's the director of the neuroethics program at Emory University and she was in Atlanta, Georgia. The segment was part of the current project The Disrupters. You can hear more highlights from the disrupters on our summer program which airs here on CBC Radio 1 Fridays right after the summer edition of The Current. That's at 9:30 or you can stream or download all 10 episodes of the disruptors at cbc.ca/thecurrent. This week's episode is about the power of sport to disrupt lives. That's our program for today. Stay tuned to Radio 1 for a new episode of The Summer Series new fire with Lisa Charleyboy this week. Meet young people who are pushing the boundaries of indigenous traditions from using social media and ceremonies to blurring gender lines at powwows. And remember you can always take The Current with you on the CBC Radio app. It lets you browse through past episodes of our show. Let's start listening in just a few seconds. You can search for stories you missed or want to hear again or listen live to your local CBC station. Right from your smartphone or tablet and it is free from the App Store or Google Play. Mike Finnerty Thanks for listening to the summer edition of The Current. And we'll see you tomorrow.

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July 12, 2017 full episode transcript

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