Rights and meanings: Advanced technologies for disorders of the brain

This blog post follows on a three minute presentation at the 2020 International Neuroethics Society Meeting that won the Springer Book Prize for “Best Overall Contribution: Clinical Neuroethics”.

I acknowledge that Neuroethics Canada is situated on the traditional, ancestral, unceded territory of the Musqueam people, and express my thanks as a settler to live, work and study on this territory.

Introduction

What are the meanings, values, priorities, and responsibilities surrounding equitable and meaningful access to advanced neurotechnologies for diverse populations?

Advanced neurotechnologies are applied in functional neurosurgery: an important class of brain surgery that aims to ameliorate severe neurologic and mental health conditions that do not respond to pharmacological and other therapies. The interventions are broadly classified as neuromodulation, ablation, and resection, and one well known example is deep brain stimulation (see this blog post by Hrincu et al. for applications in pediatric epilepsy). However, alongside rapid advancements in the field of advanced neurotechnologies, there have been reports of disparate access in both Canada and the USA. Five studies have reported racial disparities for African-American populations in the USA (1,2,3,4,5). Reduced access has also been reported for certain provinces and regions in Canada (6,7,8).

Map
Map of the major functional neurosurgery centres in Canada as of January 2021, demonstrating the unique challenge of serving geographically dispersed populations. Image created by the author.

Despite the diversity of populations living in both countries and the global availability of these interventions, there has been limited exploration of how various cultural groups may differentially conceptualize and relate to the use of functional neurosurgical interventions.

Consultations

We consulted with 29 key informants with diverse expertise in Indigenous health and Western medicine about neurotechnologies for diverse geographic and cultural communities (Harding et al., manuscript in preparation). Our analysis of the interviews is revealing that differences in the meanings and perspectives held by patients and physicians about interventions to the brain are significant barriers to receptivity and access. Innovations in telehealth, education, and low maintenance neurotechnologies are significant facilitators to access. Results from a survey we administered at the end of the interviews with medical professionals show a striking contrast between ratings of the imperative of access for people living in rural and remote areas and the realities of such access to neuromodulatory and ablative neurotechnologies across different medical conditions. Median ratings for imperative of access to neuromodulation, for example, were highest for movement disorders (95% rating high imperative), epilepsy (63%) and pain (57%). Higher imperative ratings were strongly associated with ratings of higher likelihood of access.

Scoping Review

We also conducted a scoping review of the academic literature about global Indigenous groups’ perspectives about the brain and mind (Harding, Marra, et al., manuscript in preparation). We have found that this body of literature has a significant focus on perspectives about neurological and mental health conditions, with a smaller body of work reporting philosophical conceptualizations of the mind and brain. Holism is a common theme: many studies report perspectives of illnesses as caused by a combination of spiritual, psychological and biological factors.

flow
Simplified flow diagram of the articles screened and subsequently included in the scoping review. Image created by the author.

Working Groups

For our next step, we will bring together expertise in Indigenous health and neuroethics for a series of sequential workshops to explore meanings and values for brain wellness. While the idea of hosting these working sessions by videoconference would have been previously inconceivable, in this era of COVID-19 Indigenous communities have developed innovative approaches to uphold cultural protocols in virtual spaces (Harding et al., 2020). Applying a transformative framework, we will collaborate with Indigenous scholars, knowledge holders, and healthcare providers through consensus-seeking and collaborative writings to co-create and deliver strategic recommendations for community-based and systems-based prioritization of neurotechnology for brain health, education, and consultation.

Conclusion

Through the efforts of this ongoing, spiral, community-engaged research project, we will provide recommendations and strategic partnerships for the inclusion of ethical, practical, and cultural domains in the development and delivery of advanced neurotechnologies to mitigate disparities and realize the goal of improving brain wellness.

The work discussed in this article is being conducted at Neuroethics Canada under the leadership of Dr. Judy Illes. I thank collaborators Dr. Christopher R. Honey, Dr. Patrick J. McDonald, Dr. Malcolm King, Caterina Marra, Jacob McFarlane and Vyshu Manohara, as well as other members of the Neuroethics Canada team. This work is supported by the National Institutes of Health (J. Iles; Grant number [RF1#MH117805 01]), the North Growth Foundation (J. Iles), and the Canadian Brain Research Strategy (J. Iles).

Louise Harding is a MSc student in Population and Public Health at the University of British Columbia and a Research Assistant at Neuroethics Canada. She holds a BSc in Psychology with a minor in First Nations and Indigenous Studies from UBC.

Biopic