Pervasive But Problematic: How Generative AI Is Disrupting Academia

Dominating headlines since late 2022, the generative AI system ChatGPT, has rapidly become one of the most controversial and fastest-growing consumer applications in history [1]. Capable of composing Shakespearean sonnets with hip-hop lyrics, drafting manuscripts with key points and strong counterarguments, or creating academic blogs worthy of publication, ChatGPT offers unrivalled potential to automize tasks and generate large bodies of text at lightning speed [2].

Original image generated using DALL·E text to image AI generator. Available from: https://openai.com/dall-e-2/

ChatGPT is a sophisticated language model that responds to user requests in ways that appear intuitive and conversational [3]. The model is built upon swathes of information obtained from the internet, 300 million words to be precise [4]. ChatGPT works by forming connections between data to reveal patterns of information that align with user prompts [5]. As a language model, ChatGPT has the ability to remember threads of information, enabling users to ask follow-up or clarifying questions. It is this personalized interactive dialogue that elevates it above traditional search engine models.

Unsurprisingly, generative AI has amassed a strong army of followers eager to monopolise on its efficient functionalities: 100 million people conversed with the chatbot in January alone [1].

But what might the lure of working smarter, not harder mean in academia?

Perilous Publishing, Or Powerful Penmanship

No longer a whisper shared between hushed sororities, generative AI like ChatGPT has become a powerful force proudly employed by professors and pupils alike. However, despite its popularity, uptake is not unanimous. Academics are divided.

With the ability to generate work at the touch of a button, users risk being led down a perilous path towards plagiarism, and having their development stifled. The clear threat to academic integrity and original thought is sending many into a state of panic [6–8]. Editors of scientific journals are also having to wrestle with publishing ethics, as ChatGPT is increasingly being cited as a co-author [9].

But, despite its outward looking proficiency, the generative AI model has a number of particularly unnerving limitations. In the words of OpenAI, ChatGPT’s parent company, the software “will occasionally make up facts or ‘hallucinate’ outputs, [that] may be inaccurate, untruthful, and otherwise misleading” [5].

Available from: https://chat.openai.com/chat

The rise of generative AI shines a spotlight on a troublesome issue in academia: the exchange of papers for grades. Whilst finished articles are necessary, when product triumphs over process, valuable lessons found in the process of writing can be overlooked.

“This technology [generative AI] … cuts into the university’s core purpose of cultivating a thoughtful and critically engaged citizenry. If we can now all access sophisticated and original writing with a simple prompt, why require students to write at all?” [10]

Responsively, in an attempt to stem the flow of plagiarism and untruth, and protect creative thinking, some academics have enforced outright bans of generative AI systems [2].

Unethical AI

Academic integrity aside, ChatGPT’s capabilities are also undermined by moral and ethical concerns.

A recent Times Magazine exposé revealed that OpenAI outsources work to a firm in Kenya, whose staff are assigned the menial task of trawling through mountains of data, flagging harmful items to ensure that ChatGPT’s outputs are “safe for human consumption”. Data Enrichment Specialists earn less than $2/hour [2].

Moreover, generative AI propagates systemic biases by repurposing primarily westernised data in response to English-language prompts, created by tech-savvy users with easy access to IT. For some, the commercialization of more sophisticated platforms like ChatGPT Pro will also prove particularly exclusionary [10–13].

Embracing The Chatbot

However, vying in support of generative AI in academia, are those such as Associate Professor of Learning Enhancement at Edinburgh Napier University, Sam Illingworth, who state that it would be unrealistic and unrepresentative of future workplaces if students did not learn to use these technologies. Illingworth and others call for a shift from albeit valid concerns around insidious plagiarism (OpenAI’s own plagiarism detector tool is highly inaccurate, with a 26% success rate [11]) toward embracing the opportunities as a chance to reshape pedagogy [4].

Methods for teaching and assessment are having to be reexamined, with some suggesting that a return to traditional methods, such as impromptu oral exams, personal reflections or in-person written assignments, may prove effective against a proliferation of AI generated work [12,13].

Generative AI chatbots also have the potential to become a teacher’s best friend [14]. Automating grading rubrics or assisting with lesson planning might offer a much-needed morale boost to a professional body whose expertise is being somewhat jeopardized by the emergent technology. And despite rumors of existential threat [15,16], generative AI, for now at least, poses no immediate risk of replacing human educators; empathy and creativity are among unique human qualities proving tricky to manufacture from binary code.

The Future Is Unknown

Much like other technologies that have emerged from Sisyphean cycles of innovation (think Casio graphing calculator or Mac OS), ChatGPT and fellow generative AI chatbots have the potential to transform the face of education [17].

As the AI arms race marches on at quickening pace, with companies delivering a daily bombardment of upgrades and functionalities, it is impossible to predict who, or what, might benefit or become a casualty to automation in academia. The story of AI in academia remains unwritten, but as the indelible mark left by ChatGPT suggests, it is certain to deliver a compelling narrative.

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References:

1.         Hu K. ChatGPT sets record for fastest-growing user base – analyst note. Reuters [Internet]. 2023 Feb 2 [cited 2023 Feb 6]; Available from: https://www.reuters.com/technology/chatgpt-sets-record-fastest-growing-user-base-analyst-note-2023-02-01/

2.         Perrigo B. OpenAI Used Kenyan Workers on Less Than $2 Per Hour: Exclusive | Time [Internet]. 2023 [cited 2023 Feb 13]. Available from: https://time.com/6247678/openai-chatgpt-kenya-workers/

3.         OpenAi. ChatGPT: Optimizing Language Models for Dialogue [Internet]. OpenAI. 2022 [cited 2023 Feb 17]. Available from: https://openai.com/blog/chatgpt/

4.         Hughes A. ChatGPT: Everything you need to know about OpenAI’s GPT-3 tool [Internet]. BBC Science Focus Magazine. 2023 [cited 2023 Feb 6]. Available from: https://www.sciencefocus.com/future-technology/gpt-3/

5.         OpenAi. ChatGPT General FAQ [Internet]. 2023 [cited 2023 Feb 18]. Available from: https://help.openai.com/en/articles/6783457-chatgpt-general-faq

6.         Heidt A. ‘Arms race with automation’: professors fret about AI-generated coursework. Nature [Internet]. 2023 Jan 24 [cited 2023 Feb 6]; Available from: https://www.nature.com/articles/d41586-023-00204-z

7.         Kubacka T. “Publish-or-perish” and ChatGPT: a dangerous mix [Internet]. Lookalikes and Meanders. 2023 [cited 2023 Feb 6]. Available from: https://lookalikes.substack.com/p/publish-or-perish-and-chatgpt-a-dangerous

8.         Boyle K. A reason for the moral panic re AI in academia: in work, we learn prioritization of tasks, which higher ed doesn’t prize. Speed is crucial in work— it’s discouraged in school. Tools that encourage speed are bad for some established industries. Take note of who screams loudly. https://t.co/ot8YHh7H7b [Internet]. Twitter. 2023 [cited 2023 Feb 6]. Available from: https://twitter.com/KTmBoyle/status/1619384367637471234

9.         Stokel-Walker C. ChatGPT listed as author on research papers: many scientists disapprove. Nature [Internet]. 2023 Jan 18 [cited 2023 Feb 21];613(7945):620–1. Available from: https://www.nature.com/articles/d41586-023-00107-z

10.       Southworth J. Rethinking university writing pedagogy in a world of ChatGPT [Internet]. University Affairs. 2023 [cited 2023 Feb 18]. Available from: https://www.universityaffairs.ca/opinion/in-my-opinion/rethinking-university-writing-pedagogy-in-a-world-of-chatgpt/

11.       Wiggers K. OpenAI releases tool to detect AI-generated text, including from ChatGPT [Internet]. TechCrunch. 2023 [cited 2023 Feb 6]. Available from: https://techcrunch.com/2023/01/31/openai-releases-tool-to-detect-ai-generated-text-including-from-chatgpt/

12.       Nature Portfolio. A poll of @Nature readers about the use of AI chatbots in academia suggests that the resulting essays are still easy to flag, and it’s possible to amend existing policies and assignments to address their use. https://t.co/lHyPtEEb7F [Internet]. Twitter. 2023 [cited 2023 Feb 6]. Available from: https://twitter.com/NaturePortfolio/status/1619751476947046408

13.       Khatsenkova S. ChatGPT: Is it possible to spot AI-generated text? [Internet]. euronews. 2023 [cited 2023 Feb 6]. Available from: https://www.euronews.com/next/2023/01/19/chatgpt-is-it-possible-to-detect-ai-generated-text

14.       Roose K. Don’t Ban ChatGPT in Schools. Teach With It. The New York Times [Internet]. 2023 Jan 12 [cited 2023 Feb 21]; Available from: https://www.nytimes.com/2023/01/12/technology/chatgpt-schools-teachers.html

15.       Thorp HH. ChatGPT is fun, but not an author. Science [Internet]. 2023 Jan 27 [cited 2023 Feb 6];379(6630):313–313. Available from: https://www.science.org/doi/10.1126/science.adg7879

16.       Chow A, Perrigo B. The AI Arms Race Is On. Start Worrying | Time [Internet]. 2023 [cited 2023 Feb 18]. Available from: https://time.com/6255952/ai-impact-chatgpt-microsoft-google/

17.       Orben A. The Sisyphean Cycle of Technology Panics. Perspect Psychol Sci [Internet]. 2020 Sep 1 [cited 2023 Feb 6];15(5):1143–57. Available from: https://doi.org/10.1177/1745691620919372

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Susanna Martin BSc (Hons) is a Research Assistant at The Neuroscience Engagement and Smart Tech (NEST) lab.

Advertisement

Designing for Dementia: Towards a Truly Universal Built Environment

The buildings and streets around us shape how we interact with the environment. How can we design cities that are equitable and accessible for people living with dementia?

The physical structures in which we live, work, and play constitute the built environment around us^[1]. Since we constantly interact with the built environment, architects must consider different needs and abilities in their designs to enable equitable access. This is called universal design^[2], and it can be seen all around us.

Take, for example, a crosswalk. In the image below, the sidewalk slopes down to provide wheelchair access. There are also tactile bumps to signify a crossing for people using a long cane. The walking person signal provides clear instructions for those who cannot hear the traffic slowing. All these features represent design decisions made to increase the usability of the crosswalk.

https://www.toronto.ca/services-payments/streets-parking-transportation/traffic-management/traffic-signals-street-signs/types-of-traffic-signals/accessible-pedestrian-signals/

Not Yet Universal

While designers have tried to create built environments that are universally accessible, they rarely consult people with lived experience of dementia in the design process. The result is cities and spaces that are confusing and inaccessible to those with dementia^[1,3–5].

The City of Vancouver exemplifies this disconnect in what they specify as “accessible street design”^[6]. Despite claiming to use the principles of universal design, the city’s specifications mainly focus on physical disabilities and neglect considerations for dementia. Further, dementia research tends to focus on social interactions and personal connections. Designers are simply unaware of the needs of those living with dementia^[4,7,8].

Work in the field of Environmental Gerontology – which considers the relationship between the environment, health, and aging – has made the issue clear: making the built environment more accessible can improve quality of life for people with dementia^[7]. How do we adapt our environments to better suit their needs?

Limited Work in Limited Spaces

To date, only a few small-scale research trials included people with dementia in the design process. One example is the Lepine-Versailles Garden in France, which took input from people living with dementia and their care partners. Dementia-specific features include clearly marked boundaries to the garden, and small enclosed spaces that help relieve anxiety and provide safety^[9]. These small spaces can provide a place for close, quiet social interactions, which become more relevant as dementia progresses and language skills diminish^[8].

Environmental interventions are also present in the psychogeriatric environment. One hospital in the Netherlands built custom handrails to help people living with dementia navigate more easily^[4]. For example, they made one handrail of wood and played bird noises to help residents find the garden.

Handrail with a bird located near the garden. Nearby speakers played bird chirping sounds. Reproduced from Ludden et al. (2019).

However, these findings are very limited – they apply to specific environments that are not representative of most people’s experiences with dementia. A majority of people with dementia live in their home, and they routinely navigate their environment by taking walks on their own^[3,5]. Increasingly, health research has emphasized the idea of ‘aging in place,’ suggesting that the number of people living at home with dementia will increase.

Design Principles for Dementia

So, what should dementia friendly environments actually look like? Mitchell and Burton studied the design principles that make environments accessible^[3,5]. Based on these design principles, they developed design strategies to help people living with dementia flourish in the built environment. These include:

• Small blocks laid out in an irregular grid with minimal crossroads and gently winding streets: this layout emphasises legibility, allowing people to identify where they need to go and avoid complicated crossroads.
• Varied urban form and architecture, with landmarks and visual cues: this makes different parts of a neighbourhood more distinct from each other, which can help with wayfinding and orienting.
• Mixed use buildings, including plenty of local services: this ensures people do not have to travel too far from their homes to access essential services (e.g., grocery store) and enables access without the need for driving or transiting.

These recommendations highlight the specific needs of people living with dementia that designers often overlook. For example, while cities designed on a grid are easy to navigate for most people, these grids are often repetitive and rely on numbered streets signs to navigate, making this design inaccessible to those with dementia.

From Ideas to Implementation: An Ethical Imperative

In summary, designers should prioritize the long-overlooked needs of people with dementia in their designs. Researchers have developed detailed recommendations for how to include dementia in universal design. Implementation is now the key.

With the global population aging, the number of people living with dementia is increasing. The focus on aging in place also means that many people will remain in their homes for longer and interact with the public environment (as opposed to specific dementia care facilities). It is therefore an ethical imperative that architects, city planners, and all other groups involved in the process of designing our built environment begin to consider the needs of people living with dementia.

Consulting people living with dementia during the design process is an opportunity to preserve their autonomy and dignity. This will require an overhaul of how we think about our built environment, and a shift towards truly universal design.

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References

1. Sturge, J., Nordin, S., Sussana Patil, D., Jones, A., Légaré, F., Elf, M., & Meijering, L. (2021). Features of the social and built environment that contribute to the well-being of people with dementia who live at home: A scoping review. Health & Place, 67, 102483. https://doi.org/10.1016/j.healthplace.2020.102483
2. Story, M. F. (1998). Maximizing Usability: The Principles of Universal Design. Assistive Technology, 10(1), 4–12. https://doi.org/10.1080/10400435.1998.10131955
3. Mitchell, L., & Burton, E. (2010). Designing Dementia‐Friendly Neighbourhoods: Helping People with Dementia to Get Out and About. Journal of Integrated Care, 18(6), 11–18. https://doi.org/10.5042/jic.2010.0647
4. Ludden, G. D. S., van Rompay, T. J. L., Niedderer, K., & Tournier, I. (2019). Environmental design for dementia care—Towards more meaningful experiences through design. Maturitas, 128, 10–16. https://doi.org/10.1016/j.maturitas.2019.06.011
5. Mitchell, L., & Burton, E. (2006). Neighbourhoods for life: Designing dementia‐friendly outdoor environments. Quality in Ageing and Older Adults, 7(1), 26–33. https://doi.org/10.1108/14717794200600005
6. Accessible Street Design. (n.d.). The City of Vancouver Engineering Services. Retrieved January 1, 2023, from https://vancouver.ca/files/cov/accessiblestreetdesign.pdf
7. Chrysikou, E., Tziraki, C., & Buhalis, D. (2018). Architectural hybrids for living across the lifespan: Lessons from dementia. The Service Industries Journal, 38(1–2), 4–26. https://doi.org/10.1080/02642069.2017.1365138
8. Van Steenwinkel, I., Van Audenhove, C., & Heylighen, A. (2019). Offering architects insights into experiences of living with dementia: A case study on orientation in space, time, and identity. Dementia, 18(2), 742–756. https://doi.org/10.1177/1471301217692905
9. Charras, K., Bébin, C., Laulier, V., Mabire, J.-B., & Aquino, J.-P. (2020). Designing dementia-friendly gardens: A workshop for landscape architects: Innovative Practice. Dementia, 19(7), 2504–2512. https://doi.org/10.1177/1471301218808609

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Grayden Zaleski is a Directed Studies Student under the supervision of Dr. Julie Robillard in the NEST Lab. He is pursuing a Bachelor of Science degree with a major in Behavioural Neuroscience and a Computer Science minor. His research interests include human computer interaction, accessible technology, and the use of technology in healthcare to improve patient experience. He is currently working to engage healthcare providers and community members through an innovative online ‘Tweet Chat’! Additionally, he is contributing to the first empirical characterization of social media use in dementia research, which seeks to assess the benefits and harms of social media usage for research participation. In his spare time, you can find Grayden exploring Vancouver and playing simulation games.

Lessons from end-users: how young people select mobile mental health applications

This blog post discusses findings from a peer-reviewed article titled: “What criteria are young people using to select mobile mental health applications? A nominal group study” published in Digital Health (2022, paper here).

Mental health apps: more accessible mental health support

According to the World Health Organization, as many as one in seven children and teenagers aged 10-19 experience mental health disorders (1). Despite the prevalence of mental health issues in this group, access to professional diagnosis and treatment remains low. As a result, children and teenagers are turning to smartphone applications to support their mental wellbeing. When young people search for apps to support their mental health in general or to address a specific problem, such as anxiety, they are faced with an overwhelming number of options.

How to pick a mental health app?

The smartphone applications available on platforms such as Google Play or App Store are evaluated based on general user experience or satisfaction, usually on a 1 to 5-star rating scale. This system results in apps being suggested based on popularity, rather than the content of the app or its effectiveness in addressing mental health concerns. While some mental health interventions delivered by apps are developed based on evidence, most of the apps on the market are not supported by science. Additionally, there is no regulatory oversight to prevent apps from promoting potentially harmful interventions, making false claims, or mishandling user data (2,3). Based on a search from 2016, only 2.6% of apps make effectiveness claims that are supported in any way (4). The high number of available apps combined with only popularity-based rankings make it difficult to choose apps that are safe and effective.

Young people’s criteria for selecting mental health apps

Since selecting mental health support apps is challenging, the Neuroscience Engagement and Smart Tech (NEST) lab at Neuroethics Canada, in collaboration with Foundry BC, set out to develop a tool that would make it easier to select an app that is best suited to user’s circumstances. A tool that is helpful to young people has to align with their needs and priorities. Thus, we conducted a series of nominal group meetings to identify the criteria that are important to young people when they select mental health apps. The infographic below summarizes the criteria that emerged in discussions with 47 young people aged 15-25 in four towns in British Columbia, Canada. These criteria will inform the development of an app-selection tool that will combine end-user priorities with expert input.

The future of mental health support

As mental health apps continue to increase in popularity, so does the diversity and complexity of the features they offer. For example, some mobile applications offer access to healthcare professionals via video or chat but may also use AI chat bots to provide help or counselling. As we uncovered in the nominal groups, young people want the apps to provide links to community services that are available in their area and allow users to share the information that the apps collect with their health care team. As such, it is critically important to identify the priorities of end-users to guide the ethical usage of this innovative form of mental health support.

References

1. Adolescent mental health [Internet]. [cited 2022 Dec 16]. Available from: https://www.who.int/news-room/fact-sheets/detail/adolescent-mental-health
2. Anthes E. Mental health: There’s an app for that. Nature News. 2016 Apr 7;532(7597):20.
3. Robillard JM, Feng TL, Sporn AB, Lai JA, Lo C, Ta M, et al. Availability, readability, and content of privacy policies and terms of agreements of mental health apps. Internet Interventions. 2019 Sep 1;17:100243.
4. Larsen ME, Nicholas J, Christensen H. Quantifying App Store Dynamics: Longitudinal Tracking of Mental Health Apps. JMIR mHealth and uHealth. 2016 Aug 9;4(3):e6020.

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Would you join a clinical trial advertised on Facebook? The ethics of dementia research content on social media

Some areas of dementia research are relevant to healthy older adults, and social media can help spread the word. What should researchers and the public know about dementia research content on social media to support future brain health?

Dementia risk reduction is highly relevant for healthy adults. Addressing certain lifestyle factors may reduce future cases of dementia (1). Examples include education, performing physical activity, quitting smoking, preventing head injury, and stabilizing blood pressure.

Online exposure to this topic may encourage lifestyle changes but also promote much-needed dementia research participation for risk reduction. Some dementia researchers are turning to social media as a low-cost way to increase community awareness and research participation (2–5).

Appropriateness of social media in brain health research

Health-related content on social media is not without risk. Ethical concerns accompany the use of social media in research (6,7). Common concerns include privacy, confidentiality, informed consent, the spread of misinformation, and the protection of vulnerable groups. 

Understanding how dementia research is typically presented online can inform social media use to improve public involvement. Currently, however, there is no thorough overview of the type of dementia research content users may encounter on social media. 

To inform future ethical guidance of online brain health engagement, we investigated current uses of social media for dementia research. 

Image by Jason A. Howie under the cc-by-2.0 license on Wikimedia Commons. Creator assumes no responsibility or liability for the content of this site. Original image.

Dementia research on Facebook vs. Twitter

We reviewed a sample of public dementia research posts on Facebook and Twitter (8). Our analysis included understanding the types of users posting about dementia research and the topics discussed. 

Facebook users were mainly advocacy and health organizations rather than individuals. In contrast, Twitter users largely had academic or research backgrounds. This difference in user groups may explain the greater amount of academic content on Twitter, such as peer-reviewed research articles. Most research articles were open access and available to the public but may not be accessible for a wide range of literacy levels.

For both platforms, prevention and risk reduction were main areas of focus in dementia research. Posts with these topics appeared the most frequently and received a lot of attention in the form of likes, shares, and comments.

Other popular topics included dementia treatment and research related to the detection of dementia. Treatment posts primarily discussed the approval of aducanumab¹ by the Food and Drug Administration (FDA), leading to much online debate. This may explain why, at the time, non-academic users had more interactions on dementia treatment tweets. The purpose behind most posts was to share dementia research information and knowledge.

On risk, responsibility, and stigma

The posts in our social media data emphasized individual prevention efforts, such as diet and exercise. However, topics also included social and environmental barriers that interfere with dementia risk reduction, care, treatment delivery, and other research areas. 

As stated in one Facebook post, “[the] social determinants of health can significantly impact brain health disparities & the ability to access care.”

Barriers are unequally distributed across communities that vary by race, ethnicity, sex and gender, socioeconomic background, disability, and other aspects of identity.

Dementia researchers on social media should avoid using language that elicits stigma or equates brain health with personal responsibility (9). Society-wide initiatives that overcome barriers can potentially impact future population health on a broader scale positively and more effectively.

Image from Pixabay.

Practical social media guidance is needed for dementia research

A better understanding of the dementia research space on social media can inform future ethical guidelines. Dementia research engagement should incorporate the community’s values and perspectives on using social media for risk reduction.

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¹ The FDA approved aducanumab as a treatment for Alzheimer’s disease in June 2021. The decision was met with much controversy and ethical discussion. More information can be found here.

Access the full research paper here.

This work is supported by the Alzheimer’s Association Research Grant program (JMR), the Canadian Consortium on Neurodegeneration in Aging, AGE-WELL NCE Inc., a member of the Networks of Centres of Excellence program, and the University of British Columbia Four Year Doctoral Fellowship (VH).

References

1. Livingston G, Huntley J, Sommerlad A, Ames D, Ballard C, Banerjee S, et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet. 2020 Aug 8;396(10248):413–46.
2. Corey KL, McCurry MK, Sethares KA, Bourbonniere M, Hirschman KB, Meghani SH. Utilizing Internet-based recruitment and data collection to access different age groups of former family caregivers. Appl Nurs Res. 2018 Dec 1;44:82–7.
3. Isaacson RS, Seifan A, Haddox CL, Mureb M, Rahman A, Scheyer O, et al. Using social media to disseminate education about Alzheimer’s prevention & treatment: a pilot study on Alzheimer’s universe (www.AlzU.org). J Commun Healthc. 2018;11(2):106–13.
4. Friedman DB, Gibson A, Torres W, Irizarry J, Rodriguez J, Tang W, et al. Increasing Community Awareness About Alzheimer’s Disease in Puerto Rico Through Coffee Shop Education and Social Media. J Community Health. 2016 Oct;41(5):1006–12.
5. Stout SH, Babulal GM, Johnson AM, Williams MM, Roe CM. Recruitment of African American and Non-Hispanic White Older Adults for Alzheimer Disease Research Via Traditional and Social Media: a Case Study. J Cross-Cult Gerontol. 2020 Sep 1;35(3):329–39.
6. Bender JL, Cyr AB, Arbuckle L, Ferris LE. Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment. J Med Internet Res. 2017;19(4):e104.
7. Gelinas L, Pierce R, Winkler S, Cohen IG, Lynch HF, Bierer BE. Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations. Am J Bioeth. 2017 Mar 4;17(3):3–14.
8. Hrincu V, An Z, Joseph K, Jiang YF, Robillard JM. Dementia Research on Facebook and Twitter: Current Practice and Challenges. J Alzheimers Dis. 2022 Jan 1; 1–13.
9. Lawless M, Augoustinos M, LeCouteur A. “Your Brain Matters”: Issues of Risk and Responsibility in Online Dementia Prevention Information. Qual Health Res. 2018 Aug 1;28(10):1539–51.

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Viorica Hrincu, MSc is doing her PhD in Experimental Medicine at the University of British Columbia in the Neuroscience Engagement and Smart Tech (NEST) lab.

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.

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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.

Neuroethical challenges of screening for brain injury in women who have experienced intimate partner violence

One in three women will experience intimate partner violence (IPV) in their lifetime. Up to 92% of these women will also suffer a brain injury (BI) at the hands of a partner (1,2). To put this in a Canadian perspective, for every 1 NHL player that suffers a concussion, 5,500 Canadian women suffer the same injury due to IPV. It is with these statistics in mind that research teams such as the SOAR project (Supporting Survivors of Abuse and Brain Injury through Research) have been assembled to better understand, characterize, and manage the urgent crisis that is intimate partner violence-related brain injury (IPV-BI).

A major pillar of scientific and clinical interest in IPV-BI research is designing and implementing BI screening tools specific to IPV. Although research teams approach this topic with the intent of better understanding IPV-BI, improving BI diagnostic science, and designing intervention strategies tailored to IPV-BI, careful consideration must be taken to ensure that providing BI screening information will not harm patients in other areas of their lives. To justify any health screening, two criterion must be met: 1) the presence of sufficient risk of a positive result (in other words, the likelihood of a positive result must be deemed significant); and 2) the availability of an evidence-based validated treatment or intervention in the event of a positive result (3–5). Despite these concerns, when limiting perspective to a healthcare silo, the benefits of screening for IPV-BI seem to outweigh the concerns. However, the impacts of screening for IPV-BI outside of the healthcare context must also be considered. Through applying an intersectional lens, which considers the intersection of social categories such as race, gender, class, and other characteristics of marginalization, we recognize the wide-ranging experiences of survivors of IPV and acknowledge we have a responsibility to ensure BI information in other contexts does no harm. Specific to women who have experienced IPV-BI, the legal implications of BI screening information are of particular concern. 

My master’s thesis examined the ethico-legal considerations of screening for BI in women who have experienced IPV. The concerns surrounding screening for IPV-BI arise from a history of mental health information, such as depression, anxiety, or post-traumatic stress disorder (PTSD) being weaponized against women in family law proceedings. Not only does this imply BI will be similarly weaponized, but that disorders often diagnosed alongside BI – depression, anxiety, and PTSD – will almost certainly be used in an attempt to prove a woman is unfit to parent. To examine this issue, lawyers were interviewed to elicit their knowledge of IPV, BI, and IPV-BI, as well as the role each may play in Canadian family courts.

Lawyers provided significant insight into how IPV-BI may impact the outcome of parenting disputes in Canadian family law. The major findings can be separated into three themes: (1) education; (2) capacity; (3) causation. 

(1) Education

It was clear through the interviews that there is a limited understanding of both IPV and IPV-BI by the legal profession. Despite all participants reporting they have had cases which involved IPV, most reported no formal education on IPV and its complexities or how it should factor into parenting disputes. It is therefore unsurprising that IPV is often dismissed within family law as irrelevant, and foreshadows lawyers being similarly ill-equipped to support clients who have sustained IPV-BI.

(2) Capacity

Capacity, here, refers to either a woman’s ability to give and receive legal instructions because of any deficits caused by the BI, or more importantly, the woman’s capacity to parent. Every participant stated that they would expect the opposing lawyer to use IPV-BI as a means to challenge a woman’s ability to parent. Interestingly, participants also said they would do the exact same thing if they were representing the alleged abuser, despite acknowledging how absurd that may sound. This mirrors the historical instances in family law where stigmatized health disorders such as depression were used to minimize a woman’s parenting capacity.

(3) Causation

Lastly, lawyers emphasized that it would be difficult to prove that IPV caused the BI if there was no physical evidence. Unfortunately, this is often difficult for women and lawyers to provide in situations involving IPV. In the absence of physical evidence showing IPV or IPV-BI, this becomes a situation of hearsay. In these cases, women are either not believed, their experiences of violence are minimized, or the courts acknowledge that the IPV exists but dismiss it as marital conflict and deem it irrelevant to the parenting dispute. Courts may also rely on a physician’s testimony to discuss the implications of BI on tasks relevant to parenting (such as memory). However, not all physicians are well informed on the complexities of IPV-BI. It is therefore difficult for women and their lawyers to find suitable experts who can speak to both IPV and BI appropriately without causing undue harm to women through the testimony of BI and its effects.

Should we continue to screen?

Ultimately, these themes show that IPV-BI does leave women legally vulnerable due to a lack of legal precedent (it has never been seen before), inadequate education surrounding IPV and IPV-BI for legal professionals, and the difficulty in proving causation. It is important to emphasize that the BI is not the problem. Rather, it is inserting it into a legal system that is ill-equipped to appropriately address IPV-BI and which continues to suffer from the influences of sexism and racism. Although I have highlighted issues with screening for IPV-BI, I am not advocating for the cessation of this important practice; however, screening should implement the following recommendations to ensure equitable and ethical care:

1. Expert allyship: Organizations such as SOAR should have physicians in their team who are well versed in IPV-BI and eager to advocate for women in court. 
2. Trauma-informed legal team: Connecting women to trauma-informed legal professionals ensures women feel supported and both women and their counsel are well-prepared to address IPV and IPV-BI in parenting disputes.
3. Assessment of parenting capacity: Incorporate an assessment of the patient’s capacity to parent into the screening tool. This may help counteract any allegations immediately, avoiding additional assessments and mitigating the impact these claims may have on the outcome.
4. Transparent informed consent: It is important that patients know that this information will likely be submitted in a parenting dispute by their spouse’s counsel. Informed consent will ensure patients can adequately prepare with their legal team. 

Without implementation of these recommendations, IPV-BI has the potential to become another avenue for the perpetuation of violence post-separation – a common occurrence in outcomes of parenting disputes in Canada. These recommendations call for scientists and clinicians alike to broaden their conception of ethics and contextualize their research within the reality of their participants’ and patients’ lives.  

Although current statistics show heterosexual women experience the most severe physical IPV conducive to causing BI, it is important to note that IPV in all of its forms (physical, psychological, sexual, financial, coercive control) and IPV-BI is not exclusive to heterosexual relationships or to people identifying as women. Future research surrounding IPV-BI, IPV-BI screening, and their intersection with law should be expanded to explore the phenomenon with other relationships and identities along the sexuality and gender spectrums.

References

1. World Health Organization, Department of Reproductive Health and Research, London School of Hygiene and Tropical Medicine, South African Medical Research Council. Global and regional estimates of violence against women. WHO. World Health Organization; 2014. 
2. Valera EM, Berenbaum H. Brain injury in battered women. J Consult Clin Psychol. 2003;71(4):797–804. 
3. Arora N, Hjalmarsson C, Lang E, Boyle A, Atkinson P. We should routinely screen for domestic violence (intimate partner violence) in the emergency department. Can J Emerg Med. 2019;21(6):701–5. 
4. McLaughlin KD. Ethical considerations for clinicians treating victims and perpetrators of intimate partner violence. Ethics Behav [Internet]. 2017;27(1):43–52. Available from: http://dx.doi.org/10.1080/10508422.2016.1185012
5. Palmer VJ, Yelland JS, Taft AJ. Ethical complexities of screening for depression and intimate partner violence (IPV) in intervention studies. BMC Public Health. 2011;11(5). 

Acknowledgements to Dr. Paul van Donkelaar, Dr. Judy Illes, Dr. Deana Simonetto, and the entire SOAR team for their leadership, support, and contributions to this work.

Centering persons with lived experience in brain health technology research

What is the role of the persons with lived experience in research?

Researchers and research organizations in Canada are changing the way that they think about the role of persons with lived experience in research. There is a shift away from thinking about these groups as passive sources of data and towards meaningful collaboration with them at all stages of research (1). This can involve working collectively to set research priorities, select research designs, and interpret and share research findings. There are large potential benefits, even above and beyond the ethical imperative of “nothing about us without us”. Patient engagement in research can result in work that is better aligned with the actual goals of the population under study as well as improving study enrollment and decreasing participant drop-out (2). There are also potential benefits of the collaborative process for participants themselves. In one study, grandparents who acted as research advisors reported that the experience provided a sense of purpose and a feeling of connection (3). However, prioritizing a collaborative research approach does present unique challenges. It takes time and resources, there are a wide range of methodologies and large differences in how engagement is accomplished between research groups, and there is a potential for “tokenization”, which is the appearance of inclusiveness in the absence of true collaboration.

Incorporating patient engagement practices specifically in the technology research and development space has some unique additional challenges. Emerging technologies may not yet be ready for real-world deployment at the point of care, but engaging persons with lived experience in their early development is critical. It can be difficult to know how to ask participants the best way to study a set of devices that are still under development and part of a quickly-changing commercial landscape! For this reason, pathways to involve persons with lived experience in healthcare technology research are not yet well established.

The need to engage persons with lived experience in social robotics research

One example of a potential health technology that our group would like to study in a patient-centered way is social robotics. These interactive devices are intended to be effective social partners for a person. Their functions can include acting as a fun and entertaining companion, acting as a virtual assistant (e.g., setting up video calls, using the internet to answer questions), providing reminders to take medication, and monitoring the user for events like a fall, among other things. They are being trialled for applications like supporting children’s mental health, as supports for individuals for Autism Spectrum Disorder, and as companions for persons living with dementia (4-8). The COVID-19 pandemic is likely to further accelerate the adoption of social robotics as people seek to reduce live human contact without reducing social connectedness (9).

However, social robotics development priorities are largely driven by the market, engineering constraints, and the recommendations of healthcare experts, rather than by input from persons with lived experience (10). While technically advanced devices are coming to market and manufacturers are making strong claims about the usefulness of these objects, scientific evaluation of these claims is of poor quality and does not focus on the experiences and outcomes that are important to potential users and their families. Not including the voices of potential users can lead to the development of devices that ultimately fail to meet their needs.

Engagement at Neuroethics Canada: Lived Experience Expert Groups

Our research group is currently running a set of projects looking at robotic interventions for anxiety in children and teens. To engage members of these groups directly, we have developed a Lived Experience Expert Group (“LEEG” – we call this group our “League”) to advise on all aspects of our ongoing work on social robotics for children. The group includes a mix of children, teens, and parents/guardians with lived experiences of acute and chronic anxiety and a range of ages and diagnostic groups (e.g., social anxiety, generalized anxiety disorder). Involving young people themselves in patient experience research is critical as their reports on the quality of an interaction can differ from those of adults – even from their parents’ reports of the same event (11, 12). Involving an expert group, rather than a single token lived experience partner, tips the balance of our research team towards individuals with lived experience and away from researchers, as well as promoting a diversity of voices in the work. We are excited to work with the League to refine our research questions, design smart studies, and learn more about the experiences and priorities of young people living with anxiety.

This work is supported by BC Support Unit, the BC Children’s Hospital, and the Michael Smith Foundation for Health Research and is being done under the supervision of Dr. Julie Robillard, with team members Anna Riminchan, Jaya Kailley, Kat Kabacińska, and our generous persons with lived experience partners. 

References

1. Robillard JK, Jordan I. Dialogue? Yes. Burden? No. Ethical challenges in engaging people with lived experience in health care research. Brainstorm, 32-35.
2. Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin P. Patient engagement in research: a systematic review. BMC health services research. 2014 Dec;14(1):1-9.
3. Sheehan OC, Ritchie CS, Garrett SB, Harrison KL, Mickler A, AL EE, Garrigues SK, Leff B. Unanticipated Therapeutic Value of the Patient-Centered Outcomes Research Institute (PCORI) Stakeholder Engagement Project for Homebound Older Adults. Journal of the American Medical Directors Association. 2020 May 4;21(8):1172-3.
4. Costescu CA, David DO. Attitudes toward Using Social Robots in Psychotherapy. Transylvanian Journal of Psychology. 2014 Mar 1;15(1).
5. Dawe J, Sutherland C, Barco A, Broadbent E. Can social robots help children in healthcare contexts? A scoping review. BMJ paediatrics open. 2019;3(1).
6. Hung L, Liu C, Woldum E, Au-Yeung A, Berndt A, Wallsworth C, Horne N, Gregorio M, Mann J, Chaudhury H. The benefits of and barriers to using a social robot PARO in care settings: a scoping review. BMC geriatrics. 2019 Dec;19(1):1-0.
7. Kabacińska K, Prescott TJ, Robillard JM. Socially assistive robots as mental health interventions for children: a scoping review. International Journal of Social Robotics. 2021 Aug;13(5):919-35.
8. Pennisi P, Tonacci A, Tartarisco G, Billeci L, Ruta L, Gangemi S, Pioggia G. Autism and social robotics: A systematic review. Autism Research. 2016 Feb;9(2):165-83.
9. Ghafurian M, Ellard C, Dautenhahn K. Social companion robots to reduce isolation: A perception change due to COVID-19. In IFIP Conference on Human-Computer Interaction 2021 Aug 30 (pp. 43-63). Springer, Cham.
10. Riek LD. Robotics technology in mental health care. In Artificial intelligence in behavioral and mental health care 2016 Jan 1 (pp. 185-203). Academic Press.
11. Hargreaves DS, Sizmur S, Pitchforth J, Tallett A, Toomey SL, Hopwood B, Schuster MA, Viner RM. Children and young people’s versus parents’ responses in an English national inpatient survey. Archives of disease in childhood. 2018 May 1;103(5):486-91.
12. Kerr C, Nixon A, Angalakuditi M. The impact of epilepsy on children and adult patients’ lives: development of a conceptual model from qualitative literature. Seizure. 2011 Dec 1;20(10):764-74.