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.

(Neuro)essentializing love

One of the most popular posts of all time here at Neuroethics at the Core is entitled The Science of Love by Sara Parke .  The post deals with the discomfort that Sara felt as she began to explore the  notion that love is mediated by the brain, prompted by work she did in a research lab as an undergraduate at Stanford. Even without a complete understanding of the underlying neurobiology, once one begins to ponder how love might work, most people fall into a well of despair as they realize that love, a most cherished experience, is based upon the firing of neurons and the release of chemicals. Continue reading

Neuromarketing podcast on All in the Mind

This past week, Phil Harris of the University of Melbourne, Shane Moon, Managing Director of Inner Truth, and I participated in a conference held at the Royal Institution of Australia on the subject of neuromarketing – I joined the group in Melbourne via skype. The event was hosted by science journalist Natasha Mitchell, and portions of the discussion can be found in this week’s episode of All in the Mind.

Link to download podcast of “Buying desires: Neuromarketing or neurohype?” from All in the Mind

Further coverage of the event on Natasha Mitchell’s blog

Techno-enthusiasts and techno-phobes

The December edition of the Atlantic Monthly has a very interesting article about Freeman Dyson’s famously skeptical view of climate change – he has come out forcefully suggesting that it is just not something we should worry about.  For those who don’t know, Dyson is a brilliant physicist who has spent much of his career at Princeton’s Institute for Advanced Studies, and has been both a practicing scientist as well as one who shares his insights on a regular basis with the general public – in 1996 winning the Lewis Thomas Prize for writing about science.  The author of the article, who has known Dyson for many years, ponders the question of how someone so brilliant could be in such profound disagreement with the rest of the scientific community?

The interesting part of the answer for me was this: that Dyson has an unfailing confidence in the redemptive power of technology.  I think that this attitude is at the heart of the many of the debates in neuroethics – are we enthusiastic about the potential advantages that a particular technological development (be it drug, device, or something else) may provide, or are we skeptical, referring again and again to the precautionary principle as our guiding light?

Kevin Kelly, founding executive editor of Wired magazine and hardly a technophobe writes,

“The idea of progress has been slowly dying. I think progress lost its allure at the ignition of the first atom bomb at the end of WWII. It has been losing luster since. Even more recently the future has become boring and unfashionable. No one wants to live in the future. The jet packs don’t work, and the Daily Me is full of spam. No one finds the Future attractive any longer.” Continue reading

Objectivity in Science

I recently had the good fortune to attend the Objectivity in Science conference, this past June 17 -20, 2010 at the University of British Columbia. The question that attendees set to examine was, what is objectivity and why does it matter? The conference was part of a SSHRC-funded network called Situating Science: Science in Human Contexts which aims to connect those “engaged in the humanist and social studies of science examining the sciences in situ“. Major universities across the country have held their own Situating Science events in the past year, all relating to science and technology studies or the history of the philosophy of science.

While there were many sessions to report on — in particular plenaries by Ian Hacking and Peter Galison which I found to be quite intriguing and inspiring — I’ll speak to the first two papers (apologies to Moira Howes) delivered in Session VI: Objectivity: Norms & Trust. On the whole, these papers were speaking to the facts and values which underlie science communication to the public. Continue reading

Solutions

Adbusters, the magazine for and about culture jamming, never ceases to amaze me.  But this time, the thought-provoking issue is not their content per se, but rather one of the Letters to the Editor that they published.  It is from a long-term reader named Taylor Hudson, who begins his missive with this gentle disconnection:  “With a kind smile, I’m writing to share with you why I have canceled my subscription.”  Taylor goes on to explain, in a long and very thoughtful letter, that “It’s not enough to criticize anymore.  It is exhausting, disheartening and counterproductive…  Adbusters has presented or railed around very few true solutions for fostering people’s happiness.  For therein lies the real revolution, right?  To claim the right to be happy and free?”  [Adbusters does have at least one ‘campaign’ that is intended to foster happiness: Digital Detox Week.  Regular readers will recognize its similarity to a regular rant of my own.]

I very much like the gentle manner in which Taylor Hudson made his point to Adbusters, and wish to do likewise for neuroethics. Not to disconnect, but rather to suggest that we regularly scrub our analyses of innovations in the neurosciences to be sure that they are not criticisms devoid of solutions.  It is hardly news to point out that fields such as neuroethics can slip into the realm of nagging, raising alarms about new innovations and the harm they might bring to individuals, to society, to our very way of being.  In fairness, this is a natural outcome of the kinds of issues that we deal with in the field, and probably all of us have tripped up now and again while attempting to avoid that particular pitfall.  But really, it is easy to be a critic.

The challenge in neuroethics is to distinguish ourselves from the neuro-Technophiles, for whom all change is good, and from the neuro-Luddites, for whom all change is bad.  Rather, I suggest that we strive to find a third way, using techniques of close observation to analyze ways in which advances in the neurosciences writ large are or are about to affect us all, and then offering innovative solutions to make it more likely that these wondrous, exciting and even inevitable changes in the world around us, to the extent possible, improve the human condition.

Link to Adbusters’ Magazine and their Digital Detox Week Campaign

Image Credit: Smithereensblog

Ripples in political theory

The daily bread of neuroethics is in understanding the impact of new technologies in the neurosciences upon society – new drugs that affect the brain, new ways of imaging the brain, etc.  But there are other ways in which the neurosciences affects society, and one really interesting one is that modern neuroscience is changing politics.  This is a version of the neuro meme about which I have written about before, but two items made me realize that this is happening more than I had even imagined.

The first is the implosion of the Chicago School of Economics.  Both a formal academic enterprise – its brain trust populates the economics faculty at the University of Chicago – and a school of thought, the Chicago School has had a very influential run.  The particular specialty of the Chicago School is libertarianism, the philosophy which puts individual liberty at the top of the list of important freedoms, and emphasizes that the best choices are usually made by individuals rather than by organizations, even if the latter are peopled by experts.  Among the more vocal proponents of the Chicago School has been Richard Posner, a judge who is also a prolific public intellectual: Posner has written at least 38 books, innumerable scholarly, magazine and newspaper articles, and received 11 honorary degrees, all while sitting on the US Court of Appeals (in Chicago).  Sometime after the 2008 debacle in the financial markets, Posner committed heresy: in an article in the New Republic, Posner dumped the Chicago School in its entirety, suggesting that deregulation was a root cause of the financial meltdown.  In an in-depth profile of this change of heart, John Cassidy writes in the New Yorker

“As acts of betrayal go, this was roughly akin to Johnny Damon’s shaving off his beard, forsaking the Red Sox Nation, and joining the Yankees.” Continue reading