WBP - Conversations with leading Neuroethicists

A Conversation with Francoise Baylis, Ph.D.

Professor and Canada Research Chair in Bioethics and Philosophy

Dalhousie University, Halifax, Nova Scotia

"I actually think that the mind is very much influenced by the body—but I’m quite willing to say, at the end of the day, I think identity actually is not bounded by skin."

Welcome to the latest in the Mind Matters series of conversations between prominent bioethicists and WBP Scholars. The following conversation is between WBP Research Fellow and bioengineer, Emilie Clemmens, and Francoise Baylis, Ph.D., a professor and Canada Research Chair in Bioethics and Philosophy at Dalhousie University in Halifax, Nova Scotia.

Dr. Baylis is a renowned expert in women’s health and bioethics including issues surrounding assisted reproduction and stem-cell research. But more recently she has begun work in the field of neuroethics and is especially interested in how interventions in the brain can be perceived as impacting the human sense of self. For more information on neuroethics, please visit Dr. Baylis' research website at www.noveltechethics.ca.

So, Dr. Baylis, you are well known for your work on reproductive ethics among other topics, but can you first tell us what led you to neuroethics?

Well, my interest in neuroethics very much grows out of the work that I was doing in reproductive ethics and so what happened is, I was particularly interested in the debate around the ethics of embryonic stem-cell research and obviously some of the concerns there having to do with the developing human embryo, its moral status, whether or not it should be used to develop therapeutic interventions for some very debilitating diseases we typically think of: Parkinsons, Alzheimers, spinal-cord injuries, things like that, and that work really then took me to start looking at some of the conditions and some of the prospects for intervention in the brain. So now I was looking at [how] we’re approaching women who have a reproductive problem and we’re asking them if we can have their embryos—not to develop better reproductive intervention, but we want their reproductive tissue to address other issues, and that for me was an interesting departure and one that I really wanted to spend some time thinking about, so that’s what took me very much into the realm of neuroethics.

That’s very interesting, though it’s kind of where reproductive ethics meets neuroethics.

Absolutely, and that is still at the forefront of at least some of the issues around embryonic stem-cell research—the reproductive issues and women’s interests are very much still front-and-center with at least that particular area of research in neuroethics.

What’s happened is the woman somehow has been obscured from the debate and that all we’re able to focus on is either the developing embryo in the context of some reproductive issues or, in this case, the reproductive tissue in the context of some research ethics issue, and in those contexts I think it has taken women academics to say: "excuse me, there is a woman at the center of this debate" and you cannot just pay attention to her as the fetal container or as the provider of research tissue, you really need to pay attention to her interests and where she’s situated in this debate or dialogue. And certainly, with a lot of the proposed embryonic stem-cell research, you keep wanting to say: "and where do you think these eggs are coming from, and why do you think women just want to give them to you, and is there an obligation for them to support broad societal objectives or communal health objectives, is there an obligation for them to be altruistic, why?" It is about the interest, needs, perspectives, and obligations of women.

Of course, the interests of women aren’t limited to the reproductive, and many of them might be interested in treating Parkinsons disease or other neurological disorders.

Absolutely—and I think that is extremely important to appreciate, and so part of the conversation goes to try to understand what are women’s interests and which projects do they want to support, promote, and move forward.

Okay, to bring it back to neuroethics specifically, what more can you tell us about the field of neuroethics, who’s involved, what’s the landscape like, and what are the goals or hopes?

Well there’s a range of different kinds of technologies that are being developed that really are at different stages of development, not only in terms of science but, also in terms of the ethics discourse.

So we have, for example, a range of technologies in neuroimaging—the one that’s garnering a lot of attention now would be fMRI—[fMRI measures oxygen levels and blood flow to the brain and how the blood flow changes during different situations.] A number of assumptions are made on the basis of the pictures that one is able to generate from tracking that blood flow. And I think what is particularly interesting there is, from the ethics perspective, that’s the literature that really has been moved ahead in terms of at least canvassing the issues, whether it has to do with incidental findings—so you’ve gone into image a patient looking for something and you find something else. Because the issue is: what is it that you tell the patient who didn’t ask you to go looking for this other information especially if it has huge implications for health. What if that patient’s a child? You know, what do you do with that information? The interesting thing about the ethics commentary, research, writing around neuroimaging is that it’s also looking outside the clinical context to identify a range of ethical issues.

So it’s not just what happens to the patient or the research subject in the clinical setting, but there have been predictions about its use in the context of the legal system, criminal law, who would see neuroimaging in the courtroom, why people imagine that this would be useful in terms of determining competence to stand trial. This might be especially true for example for juveniles who might need to stand trial as an adult. People have thought this could be useful in terms of either establishing full or absent criminal responsibility. And perhaps most familiar to the audience would be the prospect of using neuroimaging for detecting lying or malingering. There’s certainly been a fair bit written about that.

One of the areas, as I said, is neuroimaging—there’s a range of a lot of different kinds of technologies there, but a very interesting ethics discussion looking at the use of this technology in the clinical setting and outside the clinical setting. Also, of great interest are some surgical type interventions. One example would be brain stimulation, but we could also go back to the conversation I was having earlier around stem cells—that would be a form of transplantation, so it’s not that you not only have to generate the tissue, you also have to get it into the brain in the right place.

And of course there are people doing some interesting research that even goes beyond that in terms of what might be described as the human-machine interface. We even have some people writing about cyborgs—so there’s an interesting article, in fact, on the topic of cyborgs and identity by Grant Gillett not that long ago—so I think you’re seeing a range of different technologies where people are looking at the brain in terms of surgical intervention which I just mentioned, or the more familiar perhaps would be pharmacological intervention.

Many people would be familiar with Peter Kramer’s work, Listening to Prozac, but other kinds of issues where people are now talking about the brain as though it’s a chemical entity as contrasted with perhaps a genetic entity or an electrical entity. It’s that black box we’re still deeply interested in, and different researchers come at it from different perspectives in terms of how they imagine a successful intervention in pursuit of either a therapeutic or other goal.

You’re comment about genetics leads me to ask you: in a recent article in The American Journal of Bioethics you wrote that “our brains are us in ways that our genes never could be.” First, let me ask you why you think this is true, but ,secondly, why do you think that most of us associate who we are with our brains?

Okay. Well, I think one of the things that I want to say at the outset is I think there’s actually important distinction between the mind and the brain. I think it is an important way to nuance that comment, but the comment was really meant to sort of be reflective of what I take to be the common understanding of where the seat of the "self" is and what it is that makes us who we are, and in part what I was trying to say is in the last twenty years or so, with the Human Genome Project, we’ve paid a lot of attention to our genetics, and in some sense there’s this idea that there’s a kind of determinism in our genes that determines who we are and what we can possibly become. And, sure, we understand that there’s a gene-environment interaction but, we actually believe that without the genetic component we would never have the prospect of becoming who we are or are not, and more importantly, I would say in at least terms of public conversation, although we say we understand it is a gene-environment interaction, we often talk and act as though we really are our genes—so there’s a gene for aggression, there’s the gene for homosexuality, and we just lose sight of the complexity.

I think what we have tried to say with the brain is that right now there is still this sort of sense that the mind is somehow situated in the brain and if we could just map it and understand it we would be able to locate it, and in fact I would say sometimes that’s a real potential negative consequence with some of the neuroimaging technology. I think we do see people over-interpreting the data that they’re getting, and perhaps not paying sufficient attention to again something we know is true: brain plasticity, brain variability. And yet we’re getting these pretty pictures on the basis of which we’re making these very strong assertions and predicting that we can tell when people are lying. Well, people disagree about what causes people to lie. How do we imagine we’re going to get a picture of the brain on the basis of which I’ll authoritatively say this person is lying? We can’t do that, in fact you know we can do much less. But I think the point there was really to sort of say, look, in common understanding people think there is something about who we are that’s in the brain and I think if you were to present most people with the fanciful scenario of the science fiction body transplant and you were to take the head off of one body and swap it with the head of another body and you were to ask "where’s the real person?", it would go with tracking the head and not the body.

I don’t actually have this sort of stark dualism between the mind and the body. I actually think that the mind is very much influenced by the body, but I’m quite willing to say, at the end of the day, I think identity actually is in fact not bounded by my skin. It’s not even in my body, it’s out there, it’s between me and the world and we’re constantly negotiating it. It’s not static, in any way shape or form. I’m projecting a sense of self—that sense of self is informed by my body, is informed by my thoughts, but the rest of the world is responding to what I’m putting out there and my view of this is that if the rest of the world doesn’t respond in a particular way that supports the narrative, the stories that I’m constructing about who I am and what my place is in the world, I won’t, in fact, be able to sustain that identity. I cannot persuade you that I am brilliant if I behave in such a way—and you respond, and the rest of the world responds in such a way that just negates that theory about who I am—and you can probably say that if she can maintain this robust an identity in the face of all this contradictory feedback, maybe there’s mental illness.

So you’re saying that actually our part of our identity is how we’re perceived by others as well?

That’s what I’m saying. I’m saying that there’s this kind of relational identity and I am not able to close myself off from the world, construct my identity and have that be me, independent from my environment, my context which tells me who I am, which allows me to sustain certain kinds of stories.

Well that’s interesting. I think it’s perhaps a little bit controversial and perhaps difficult for many of us in the scientific field to swallow whole.

I well understand that. I’ve got a colleague that I work with who is a brain surgeon, who works primarily on tumors, and he thinks that the mind is somewhere in the brain and as he goes in there to remove tumors it’s quite possible that at the end of the surgical intervention, the patient that he will meet or confront may have a different sense of self and I am not trying to deny that reality, I’m just wanting to offer up that that’s not the whole story.

Part of what will then matter is when that person doesn’t quite see themselves in the same way or understand themselves in the same place. It will very much matter how their immediate family and friends respond and whether they’re able to say, “Oh, this isn’t the real Francoise”, or “Francoise before the surgery was so different—she was this kind, sweet person and now she’s this assertive, aggressive person that I don’t recognize.” And I, Francoise, might say the same thing about myself, say that I don’t recognize me, but what if I don’t have that insight, what if I think I really am the same person and it’s the rest of the world telling me, no, that you have changed radically and you know I’m putting this in terms of personality because I really want to make the point starkly that that’s a legitimate worry for patients. Will these interventions that they consent to change who they are? And for a lot of the stuff that we do on [informed] consent, this is the unique area in which the very organ I think we rely upon to give that informed choice is the organ that we are consenting to have manipulated and/or changed.

Well you mentioned some ways that neurological interventions, in particular surgical interventions, might have a negative affect on our personal sense of identity, our personal sense of self. What about some positive ways in which the developments in neuroscience might help us understand who we are or develop a more profound sense of self?

One of the interesting things here is the question you’re asking just really makes transparent how much of what we value is a function of our environment.

So what do I mean by that? Let’s take chemical intervention such as psycho-pharmacology because I think it’s an easier kind of example. We’re already using pharmaceuticals to help people with concentration, to help people with memory, to help people who are sleep-deprived and now there’s talk about using Proprananol for post-traumatic stress disorder, and you think about those kinds of things and it’s positive in the sense that we’re hoping to attend to ways of being in the world which individual people experience as dysfunctional for themselves. And I think that the interesting thing there is that you then have others who are worrying about, well, that’s deeply problematic if you know I can’t know the difference between the real Francoise and the Francoise on drugs. And I think that there’s this sense that somehow we’re losing the ability then to identify who is the authentic being.

Now there are others who would completely discredit that way of talking—that there is no authentic self there, that the self is always a construction and the authentic person is the person before you, whether they’re on drugs or not. What’s also interesting is that in the wake of the genetics concerns that have been raised, for which there is a historical precedent, most people have named that the real issue will not be the abuse of genetic technology by the state or by a political leader but that rather what we’ll see is willing uptake by the masses. And I think we are starting to see that more people think about this as an improvement. I would want to improve my genes if I could do that, then I would become a more productive person or a more creative person or a more whatever. And I’m not a hundred percent sure that we would have that kind of perspective with respect to interventions in the brain even if it were the case where people said "I just want to be smarter such that I can help humanity." There would be a different kind of intuitive response to whether or not one imagines that happening solely as individual choice or whether this is an area in which we ought to still fear state intervention.

A very simple example—we talked about neuroimaging earlier. People imagine that technology being used by the state in the name of national security.

Exactly. That gets back to our conversation about our belief that our brains are ourselves and we are perhaps more squeamish about, or more fearful of, interventions in the brain than we are of a pharmacological intervention or gene therapy intervention—something that affects the rest of our body as well.

Perhaps. And the other thing that we haven’t touched upo, and I think is really important here, is that the brain is associated with consciousness and is associated with rational thought, etc. And it’s these types of traits that we have used historically to establish our moral standings. And I think this is not inconsequential that the risks in terms of brain manipulations could be quite far-reaching if we imagine that those kinds of manipulations have the potential ability to move us in or out of the moral community. That’s pretty striking.

I guess it’s kind of a catch-22 in a way because we’re building up, we’ve built up a vast body of human research study ethics and then once we start to manipulate the brain does that entire structure fall or become affected or weaken in some way?

Well, certainly questions of that kind were at the center of an article I wrote with a colleague of mine, Jason Scott Robert, where we were looking at embryonic stem cell research, specifically in the context of making chimeras. And what we were particularly interested in was taking human embryonic stem cells and putting them into either non-human primate embryos or fetuses or even mature animals. And I think one of the things we were asking important questions about is what does it mean to create a chimera in that kind of context that is both part human and non-human primate and imagine that it could have such an impact that we would have at least call into question the moral status of that new creature. Beforehand, you thought you had a lab animal, an animal that has and could legitimately be used in the context of research, and part way through the research project, because of your interventions, it’s now no longer clear that it has the moral standing it had before, because perhaps you have conferred upon this creature those very traits that we typically use in order to grant ourselves certain rights which would not allow us to be taken and simply used as research subjects.

And it is important, of course, to point out that scientists are interested in creating human-animal chimeras not just because they want to see what happens but, because there are important medical advances that may come from testing stem cells, and of course, for ethical reasons, we do animal testing before we do human testing.

Absolutely—but to me, that’s an area where bioethics can make a very interesting and important contribution by asking provocative questions. So, first of all, you’re absolutely right. Scientists are not just trying to do this just for the fun of it: can we see what kind of monster we could create. That’s really not what’s happening at all. These are very responsible scientists that have the goal to make model systems in which they’ll be able to develop and test certain kinds of therapeutic options, or alternatively, they’re looking at taking stem cells that they have derived and they’d like to eventually transplant into a human but, before they do that, they want to test it in an animal to make sure, for example, that it’s not going to make a tumor or that it’s going to go where it needs to go and become the kind of cell that it needs to become. And I think that we could easily put this in the context of responsible science. We can easily put this in the context of existing norms. That’s how we do all kinds of research.

Well the interesting thing for me is to call into question: that may be the way we’ve done things, but is that the right way to be doing things? Now you know, in a sense, that is going to sound controversial: what do you mean, we’ve had this approach for some fifty sixty years, it’s well established, before you go into the human you would do these preclinical trials in a range of animal models in order to know what to expect in the human setting. Well what I find fascinating is that we’ve assumed, I will argue, that it’s unethical and I’ll say back to you: why is it unethical to do it in a human? We’ve said for example in my country, really clearly in Canada, but in a number of countries around the world, we’ve said you can do research in the human embryo up until fourteen days. So I want to say, what’s wrong with taking stem cells that are of human origin and putting them into a human embryo to ask the very same legitimate scientific questions: will these stem cells cause a tumor, will these stem cells proliferate, will these stem cells develop in the way that I anticipate or want? And I’m going to say back to you: you know what, I’d be much happier with the answers to those questions if you took human stem cells and put them into a human embryo instead of taking human stem cells and putting them into a non-human primate embryo and then trying after the fact to extrapolate back to the human. Why would you want to do that? You’re introducing a problem in terms of an inferential gap, which you don’t actually need to do.

Just to argue on a scientific level, the embryo studies will most likely not be enough. We can’t really assess tumor formation necessarily unless it was perhaps in an adult panel.

Sure. And that’s a very sound concern and I would just have another scenario to present and the concern there I would raise is we actually have a lot of evidence from other research that in fact we can’t always extrapolate from the non-human model to the human model.

Certainly. And that’s always a concern for any type of scientific research study.

But let me add one more thing which really is an insight by a colleague of mine but, which I am in complete agreement with and that’s where they’re asking the question: what does the animal model model? So let’s go back to stem cells for Parkinsons or gene transfer for Parkinsons.

Most of the animal models right now being used to study Parkinsons—which are either rodents or non-human primates—what they model is the tremors. They’re not modeling the loss of mental acuity. You’re able to make a rat that has those kinds of tremors, you’re able to make a non-human primate by giving them MPTP have that kind of overnight Parkinsonian effect and you’re able to work with that. So what happens, or what is at risk of happening, is that we just might lose sight of that which is really of keen interest to the patients inflicted with that condition.

Now please understand it is much more complicated than that but, it does, I think, raise an important question: how does the science that we do shape how we understand the question that we are trying to answer?

I’d like to switch subjects, just for a moment, to get back to women—since we are the Womens Bioethics Project— and talk about the ways that science and neuroscience can affect women and the roles that women can play in shaping ethics. So, we did mention women a little bit earlier with respect to reproductive technologies but, there are other ways that women can be especially uniquely affected by neuroscience. For example, it’s been shown that women are more prone to certain psychological illnesses such as depression. So, would we benefit from gender specific studies of the human brain?

. I do think that this is the context in which some of the critiques of feminists around research, research ethics, research agenda—where really the norm has always been sort of the middle-aged white male—come to the forefront in this context, and I think one of the things that would be fascinating to look for is are we seeing that kind of gender bias in the context of inclusion/exclusion criteria for participation in research? Who are the research subjects in these various kinds of interventions?

You might think, depending on what you’re studying, that you would actually see a bias towards [inclusion of] women if you’re thinking about dementias, for example, that have a later onset. Women who right now have a longer life span, would we see that kind of statistical difference reflected in the research population? I don’t know. But I think those are the kinds of questions I’d be interested in looking at really carefully to see if the work that feminists have done around, for example, the issue of research participation have had a genuine impact such that women are not being denied the potential benefits of research.

I think it’s still very much an ongoing issue—the inclusion of women in research studies—and it does seem to center around reproductive capacity, as you well know, and the particular inclusion of pregnant women of reproductive age—

And that’s going to be a fascinating thing to look for because that’s what we would refer to as one of those boiler plate kind of statements where automatically, no matter what the intervention is, we’re going to exclude women of reproductive capacity.

I sit on research ethics boards which would be the Canadian equivalent of IRBs, and I can tell you that there are studies on knee surgery where we excluded women of reproductive age and you want to say: what, they don’t have knees? I mean it sounds somewhat facetious but, the response that you’ll get back is that it is going to be a confounding factor or it will just contaminate the data, and you want to say: excuse me, fifty percent of the population is us—how can we be of a confounding factor?

But let me just name one other thing which is kind of tangential but, it’s something that I am deeply committed to wanting to mention—perhaps one of the things that we need to pay particular attention to, if we’re looking at dementia and perhaps some other kinds of trauma to the brain—we need to think about the role of women as caregivers.

And I think that’s an ethical issue, and one of the things that is striking to me—and I’m guilty of it too, so this not about pointing the finger—but it’s just so much easier to look at the sort of sexy, trendy things that are happening in terms of neuro-intervention.

I’m doing a lot of work writing about stem cells of the brain. You know, it’s cutting edge science, it’s exciting and there’s all kinds of unknowns, etc. but, if you were talking about neuroethics—if you’re talking about things that matter to patients—you’re actually looking at some pretty mundane things like dementia. And then if you start to look at the reality, you want to look at issues of quality of life, you want to look at the facilities that are or are not available to people with those kinds of conditions, you want to look at what are the support systems available to those who are expected to have caregivers—those are HUGE ethical issues. I just worry that it’s easier for us to pay attention to something like deep brain stimulation or fMRI or, like I said, stem cells for the brain.

I think we’ll end with that, but I can’t tell you how glad I am that you did bring it up because, as a woman and a mom, it’s something that I know in my everyday life affects the people that surround me, my friends, my family. It’s something that we’re all concerned about and that really does get lost often in the conversation about the sexy technology such as stem cell and cranial stimulation and things like that, so I heartily thank you for bringing that up.

The last thing that I would ask you, though, is what advice do you have for us, for the Women’s Bioethics Project, as we work to engage policy makers and everyday women on the issues surrounding neuroscience and neuroethics.

Well I think it’s really important to always pay attention to the big picture. And I think if you’re looking at the big picture you don’t see patients or conditions or intervention in isolation, but you really try to pay attention to the context in which certain kinds of interventions get developed for certain kinds of patient populations, do or do not get researched, do or do not get funded. What are all the synergies that make that happen?

I also think that it’s really important to pay attention to different practices and different policies as they develop, with a particular eye on whether or not we’re seeing those disproportionately impact certain segments of society, and I guess I think that’s particularly true perhaps around issues of mental illness. This is not gender per se, but I think we have certain kinds of assumptions about who does and does not have which kinds of mental illness, whether it’s the kind that warrants being treated with an SSRI or whether it’s the kind that lands you living on the street. And I think we need to really pay attention to that, and I think if we can do that, that will certainly bring us back to my last comment which is that it’s that kind of perspective which would not allow us to lose sight, for example, of the role of women as caregivers to persons with Alzheimer’s. That would be the kind of concrete thing that we would see if we were constantly paying attention to the context and paying attention to the disproportionate impact of certain practices and policies on members of our community.

Excellent advice, and Dr. Baylis thank you so much for speaking with me today. It’s been a true pleasure and I have learned a lot.

Well great. Thank you very much for having me.

Interview conducted May 2007 via telephone.