Seizing Hope: High Tech Journeys in Pediatric Epilepsy

Please join us for the world premiere of Seizing Hope: High Tech Journeys in Pediatric Epilepsy!

5:00 PM – 6:15 PM PDT
Wednesday, July 6, 2022
VIFF Centre, 1181 Seymour St., Vancouver, BC V6B 3M7
RSVP to the event here: https://seizinghopefilmvan.eventbrite.ca

Can new technology bring hope to children who have drug-resistant epilepsy?

More than 500,000 children in Canada and the USA have epilepsy. About a third of those children continue to have seizures despite taking anti-seizure medications, also known as pediatric drug resistant epilepsy (DRE). Surgery may be one option for them, but what if there is another option that is less invasive or more effective? What if new technology can bring hope to children who have DRE?

EVENT TIMELINE
4:15PM Doors open
5:00PM Screening starts
5:45PM Panel and Audience Q&A
6:15PM Public event ends

MODERATOR:
Judy Illes, CM, PhD, FRSC, FCAHS

Professor and UBC Distinguished Scholar in Neuroethics
Director, Neuroethics Canada
University of British Columbia

PANELISTS:
Patrick J. McDonald MD, MHSc, FRCSC

Associate Professor and Head, Section of Neurosurgery
Section Head, Neurosurgery, Shared Health Manitoba
Department of Surgery
University of Manitoba

Johann Roduit, PhD
Science Communicator, Producer, and Founding Partner of Conexkt

Please note that seating is general admission and is first-come, first-served. Tickets obtained through registration at Eventbrite do not guarantee guests a seat at the theatre. Theatre is overbooked to ensure a full house.


ABOUT SEIZING HOPE
Families with children suffering from pediatric drug resistant epilepsy (DRE) face complex realities. In a world guided by the promises of technology, the goal of Seizing Hope is to raise awareness about the options offered by different technologies specifically for the brain in complement or as an alternative to treatment with medication. As the directors and producers of this mini-documentary, we want to empower and improve decision-making by exploring values and priorities through the lens of the families and doctors who care for them. We compiled the stories of four families with children who have pediatric DRE to shed light on their hope, trust, and empowerment journey.

The views and research presented in this documentary represent a multi-year neuroethics project funded by the National Institute of Mental Health of the USA National Institutes of Health, BRAIN Initiative.

CREDITS
Neuroethics Canada UBC, with funding from the NIH/NIMH BRAIN Initiative (#RF1MH117805-01) in association with Conexkt Innovation Studio And Cassiar Film CO. present Seizing Hope.
Featuring the Bagg, Chartrand, Thompson, and Cowin families.
Executive Producers Dr. Judy Illes and Dr. Patrick J. McDonald.
Produced by Dr. Johann Roduit. Directed by Adam Wormald.

Learn more at https://www.seizinghopefilm.com/

Brain wellness, genomic justice, and Indigenous communities: Supporting wellness and self-determination

COMMUNITY CONVERSATIONS

Thursday, June 9, 2022
4:00 PM – 5:30 PM PDT
Please register here for the Zoom details: https://ccbwic.eventbrite.ca

Join us for a conversation about supporting Indigenous peoples’ wellness and self-determination in the areas of genomics and brain wellness. Hear perspectives from Krystal Tsosie, co-founder of the first U.S. Indigenous-led biobank, and from members of a working group that convened this past fall to explore the meanings of brain wellness in an Indigenous health context. Our conversation will span topics including research and data sovereignty, intersections between genomic ethics and neuroethics, and uplifting community voices and perspectives. Come ready to learn and consider how our positionalities, lived experiences and cultures can impact the way we think and reason about ethics.

Panelists:
Krystal Tsosie, MPH, MA
Navajo Nation
PhD candidate, Genomics and Health Disparities
Vanderbilt University

Bryce Mercredi
Métis Nation
Elder

Cornelia (Nel) Wieman, MD, MSc, FRCPC
Anishinaabe (Little Grand Rapids First Nation)
Deputy Chief Medical Officer, First Nations Health Authority

Malcolm King, PhD, FCAHS
Mississaugas of the Credit First Nation
Professor, Community Health and Epidemiology
College of Medicine, University of Saskatchewan

Sekani Dakelth
Nak’azdli Nation
Community member and activist

Moderated by:
Louise Harding, BSc

MSc Student, School of Population and Public Health
Neuroethics Canada, University of British Columbia

We are grateful to the UBC W. Maurice Young Centre for Applied Ethics for providing funding for this event.

What’s new in spinal cord repair?

COMMUNITY CONVERSATIONS

Tuesday, June 7, 2022
4:00 PM – 5:30 PM PDT
Please register here for the Zoom details: www.ccmtg.eventbrite.ca

Come join us for an interactive conversation with experts to discuss the latest in different approaches to spinal cord repair!

PANELISTS:
Andrea Townson, MD, FRCPC
Medical Co-Chair, Regional Rehab Program, VCHA
Clinical Professor
Department of Medicine, University of British Columbia

John Madden, PhD, PEng
Director, Advanced Materials and Process Engineering Laboratory
Professor
Department of Electrical & Computer Engineering, University of British Columbia

Karim Fouad, PhD
Co-Director and Editor, Open Data Commons-SCI
Professor and Canada Research Chair for Spinal Cord Injury
Department of Physical Therapy and Neuroscience and Mental Health Institute, University of Alberta

MODERATED BY:
Judy Illes, CM, PhD
Director, Neuroethics Canada
Professor and Distinguished University Scholar, UBC Distinguished Professor in Neuroethics
Department of Medicine, University of British Columbia

Worlds Apart – Ensuring Equitable Access to Advances in Brain Health

Join us for the 2022 Brain Awareness Week Annual Neuroethics Distinguished Lecture featuring Dr. Patrick McDonald!
 

Tuesday, March 15, 2022
4:00 PM – 5:30 PM PDT
For the Zoom details, kindly RSVP here: https://ncbaw2022.eventbrite.ca

Overview
Rapid technological advancements have led to the potential for significant improvements in brain health, expanding both the range of conditions treated and number of patients who can be helped. While these advancements hold great promise, they also come with considerable cost and a risk that they are not offered to all who may benefit from them, especially those in vulnerable populations. Advances in treating children with epilepsy and adults with movement disorders make equitable access to all ever more critical.

Patrick McDonald MD, MHSc, FRCSC
Dr. Patrick McDonald is a pediatric neurosurgeon at Winnipeg Children’s Hospital, Head of the Section of Neurosurgery at the University of Manitoba and a Faculty Member at Neuroethics Canada in Vancouver, BC. He is Chair of the Ethics Committee of the Royal College of Physicians and Surgeons of Canada and Past President of the Canadian Neurosurgical Society. For twenty years he has combined a practice caring for children with neurologic illness with an interest in the ethical issues that surround that care. Collaborating with Professor Judy Illes, Director of Neuroethics Canada, he studies the neuroethical issues inherent in the adoption of novel neurotechnologies to treat brain illness.

Brain Awareness Week
Brain Awareness Week is the global campaign to foster public enthusiasm and support for brain science. Every March, partners host imaginative activities in their communities that share the wonders of the brain and the impact brain science has on our everyday lives.

Experimental Neuroethics

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Photo credit: Timothy Epp, Shutterstock

Four years ago, Neil Levy gave the concluding lecture at the first Brain Matters conference in Halifax. He alerted the audience of neuroethicists to the fact that the field of philosophy was undergoing a revolution – rather than muse from their armchairs in the ivory tower, a group of renegade philosophers were carrying out real experiments, asking people what their intuitions were about central issues in philosophy. Dubbed experimental philosophy, the new initiative was met with more than passing resistance from traditional philosophers. The apostate experimental philosophers responded by developing a logo of a burning armchair.

The landmark experiment was carried out by Josh Knobe, and its findings subsequently became known as the Knobe effect (you can watch a great recreation of the phenomenon in this YouTube video). Essentially, what Josh did was repurpose an old method from social psychology called the contrastive vignette technique (CVT) [1]. At its simplest, the CVT involves designing a pair of vignettes that carefully describe a particular situation (in the case of experimental philosophy, one that is often morally charged) but crucially differ in one detail, hence the term contrastive. Respondents see one and only one version of the vignette, and are then asked questions about what they have just read, with responses commonly recorded as a numerical rating on a Likert scale. By comparing the averaged responses between separate groups of people who have read the vignettes, the experimenter can systematically investigate the effects of small changes (of which the respondents are entirely unaware) upon attitudes towards nearly any topic. The experimental philosophers tend to use the technique to explore the meaning of concepts. Neil Levy pointed out that this same approach could, in principle, be applied to the full range of issues in neuroethics.

Neil’s presentation struck me like a thunderbolt. I had come to the field of neuroethics with a background in cellular and molecular biology, and had spent much of my career as a card-carrying reductionist: as a graduate student in the 1980’s, I championing the then-novel technique of recording from single neurons in freely moving animals, and as a postdoc I moved on to the better controlled (if less naturalistic) technique of patch clamp analysis of identified neurons in slices of brains. My subsequent rise through the ranks of academia was one in which I applied quantitative rigor to every question that I asked, and in the circles in which I traveled, this was lauded as the ultimate way to provide reproducible (and by inference, meaningful) results. I saw at once that the CVT opened the door towards doing something similar in the field of neuroethics.

My research group at the National Core for Neuroethics has embraced the use of contrastive vignettes wholeheartedly, and with a nod to the experimental philosophy camp, we call the approach Experimental Neuroethics. The team is applying the technique to a range of issues in contemporary neuroethics, probably best exemplified by our recent publications exploring public attitudes towards cognitive enhancement [2] as well as the acceptability of overt and covert nudges [3].

If the vignettes appear simple, I can assure you that properly crafting them is hard work. We begin with a carefully considered hypothesis and regularly find that the hypothesis morphs substantially (usually into something much more insightful) as the process unfolds. We then compose two or more contrastive vignettes, working hard to have the vignettes as minimally contrastive as possible (one word differences between vignettes is the ultimate goal, but this is often not feasible). Finally, we develop questions; we like to have the wording of the questions always be identical irrespective of the contrastive nature of the vignette.

Then the real fun begins. After a day or two, we assemble as a team and attack our previous work. Inevitably, we find it wanting in some respect. Sometimes, embarrassingly so. We find it best to begin by asking whether the vignette and the questions directly address the hypothesis. Sometimes that means that the hypothesis changes. Nearly always, that means that the vignette changes. This process is repeated again and again, over days and weeks and sometimes months (yes, and even sometimes years!) until we have a set of vignettes that get to the heart of the matter.

At some point late in the process we carry out cognitive pre-testing. This involves sharing the vignette and the questions with someone who has no particular expert knowledge (friends of friends are likely culprits), and debriefing them about what they read. We are sometimes amazed to find that what we intended for people to glean from a vignette is at odds with their reading of the vignette. That sends us back to the drawing board.

We also run some metrics to determine whether the words we have used are understandable by a general audience. We use online readability tests such as this one to establish the educational level required for understanding the vignette; our goal is that no more than a high school education is required. Finally, we launch the survey, recruiting respondents from amongst the thousands of people who have signed up on Amazon’s Mechanical Turk – they’re more representative of the real population and aren’t as blatantly WEIRD as typical undergraduate samples. And then we hold our breath.

Once the data is analyzed, we get mired once again in deep discussion. For it is not just the quantitative aspect of Experimental Neuroethics that it satisfying (to me), but also that the data gives us an entirely new benchmark for engaging in the process of wide reflective equilibrium. Throughout this process we remain aware that an ought can not derive from is, but having the data at hand, our version of ought is very much informed by the is. Ultimately, our data emerge in concert with our normative insights, and then one more advantage of Experimental Neuroethics is realized: it is easy for others to replicate our experiments, or even to improve them by taking our vignettes and modifying them to further test their own. This iterative process of replication, critique, and systematic modification has proven to be a robust strategy for advancing insights into the nature of biological and physical phenomena. Only time will tell whether Experimental Neuroethics catches fire in our discipline as it has in the field of philosophy (where it remains controversial). If it does, we can trace it back to Neil’s presentation in Halifax….

[Cross posted at the Neuroethics Blog]


[1] Burstin K, Doughtie E, Raphaeli A. Contrastive Vignette Technique: An indirect Methodology Designed to Address Reactive Social Attitude Measurement1. Journal of Applied Social Psychology. 1980;10(2):147–65.

[2] Fitz NS, Nadler R, Manogaran P, Chong EWJ, Reiner PB. Public attitudes toward cognitive enhancement. Neuroethics. 2013 doi: 10.1007/s12152-013-9190-z.

[3] Felsen G, Castelo N, Reiner PB. Decisional enhancement and autonomy: public attitudes towards overt and covert nudges. Judgment and Decision Making. 2013;8(3):202–13.

Communication with vegetative state patients: Dialogue or soliloquy?

By Ania Mizgalewicz and Grace Lee

The world first heard from Canadian Scott Routley this past week. Routley, who has been in a diagnosed vegetative state for the last 12 years, seemed to communicate to scientists via signals measures from blood flowing in his brain that he was not in pain. The finding caught the headline attention of major news sites and spurred vast public commentary. Comments ranged from fearful to hopeful about mind reading, clinical applications of technology, and the ability of this technology to allow patients to communicate their desires to live.

Leading neuroscientist Adrian Owen in London, Ontario, articulates that the technology currently allows patients to respond to yes or no questions, but may one day be used to aide in more interactive communication. Questions would center on daily living preferences, attempting to improve quality of life and health care.

The findings by Owen and his group are truly exciting and provide great hope to the historically neglected population of people with serious brain injuries. Here at the National Core for Neuroethics, we encourage more discussion about the ethical implications of this technology. Questions such as those surrounding decisions about end of life are far in the future. The focus at the present should thus remain on how to validate this technology to one day be used in the clinical setting. If clinical use will be feasible in the future, we would need to address questions about access to the technology and the impact that its availability would have on families of patients.

Great caution and restraint is needed when coupling this still emerging technology with concerns about mind reading, or clinical decision-making about end of life. Hype here unfairly detracts from the true value of this work. With one in five vegetative patients showing signs of consciousness in these studies, the focus should remain on improving their daily surroundings, providing them a means of communication, and supporting their family members. It should also spark a conversation on the effectiveness and validity of current clinical tests used to diagnose these patients at the bedside.

Top image: wellcome images / flickr
Bottom image: Noel A. Tanner / flickr

Jonathan Haidt in conversation

ImageJonathan Haidt, Professor of Psychology at the University of Virginia and author of The Righteous Mind has been visiting UBC the past few days, and he stopped by at the National Core for Neuroethics to discuss a variety of issues in which we have a common interest.  While he was here, he was kind enough to sit with me and have a conversation about groupish genes, the response to his upcoming appearance on the Colbert Report, and current events.

A modest proposal: introduce bioethical review into the drug approval process

There has been raucous furor over the decision of Kathleen Sibelius, the Secretary of Health and Human Services in the Obama administration, to overrule the FDA’s approval of the drug known as Plan B One-Step as an over-the-counter drug. It has never previously transpired that the FDA has been overruled on a matter that falls under its jurisdiction such as this, and FDA Commissioner Margaret Hamburg issued a carefully worded response which, given that Sibelius is her boss, was remarkable for its forthrightness: Continue reading

The High Price of Materialism

The Center for a New American Dream has just posted a great video by Tim Kasser entitled The High Price of Materialism.  In the video, Tim points out the myriad ways in which consumer culture degrades the quality of our lives. Worth noticing are the myriad neuroethical issues that he raises, from the effects of advertising upon our brains to the education that we provide to our children.

For a list of references on the subject, visit here