Shelly Benjaminy and Anthony Traboulsee reflect on effective public engagement in brain research.
The field of Neuroethics aims to align neuro-technology development with societal values. It embodies a deep commitment to engaging citizens in deliberations about research in an effort to democratize science. But, public engagement is not without challenges. Precedents in the brain sciences illustrate that pluralistic deliberations may reveal divergent opinions between the public, researchers, and policy makers. Differing beliefs and worldviews may be difficult to reconcile. Maintaining public trust amidst conflicting priorities may threaten the sustainability of research enterprises. However, community engagement experiences in the neurosciences offer opportunities to reflect on partnering with citizens in the development of science.
Community engagement in the neuro-sphere has been marked by many successes. To give an example from addiction science, advocates in Vancouver have carved a niche for InSite, a supervised injection facility for individuals who use drugs, despite numerous social and political hurdles. Recent years have also seen community engagement that has blurred the distinction between researcher and researched. For example, in 2008 preliminary evidence suggested that lithium carbonate might delay the progression of Amyotrophic Lateral Sclerosis (ALS). Because ALS has few available therapies, patients began accessing lithium carbonate “off label” while ALS trials were underway. Advocates in the ALS community partnered with PatientsLikeMe—an online patient network—to gather outcomes data among those using the drug off label. This patient-led study suggested that lithium carbonate was ineffective, which led to halting scientist-led trials. This initiative spared patients and researchers the significant opportunity costs of pursuing an ineffective therapy.
While successes in community engagement in the neurosciences are many, public controversies have also revealed challenges. One recent example is chronic cerebrospinal venous insufficiency in the multiple sclerosis community. In 2009, researchers hypothesized that narrowed veins in the neck, are the cause of multiple sclerosis. These narrowed veins were thought to hinder the removal of blood from the brain and spinal cord and cause a build-up of iron that induces inflammation and myelin sheath attack. This hypothesis was followed by a trial that tested a vein opening operation, termed “Liberation Therapy.” The surgery initially demonstrated symptom improvement in a small sample of patients, and immediately caught the attention of the multiple sclerosis community. The scientific community, however, was sceptical, and follow up studies demonstrated that chronic cerebrospinal venous insufficiency occurs at equal rates in the multiple sclerosis population and general population.
Despite scientific concerns, the publicity of the Liberation Therapy was largely fueled by multiple sclerosis community activists on social media. Within two years of the initial trial, thousands of people engaged with more than 500 Facebook groups, pages, and events about the procedure. Over 4000 YouTube videos about this procedure surfaced. Emotionally charged accounts documented the positive experiences of patients who underwent the procedure. Anecdotal evidence motivated thousands to seek the surgery in countries that continued to offer it despite warnings from the scientific community and regulatory agencies.
Advocacy efforts persisted even in the face of severe side effects and deaths linked to these surgeries. Advocates continued to publicize the Liberation Therapy, organize public demonstrations, and lobby governments for further research. Such advocacy efforts mobilized funding for additional research, despite some concerns about the lack of clinical equipoise.
Recent randomized clinical trials in Canada and Italy report negative results from the chronic cerebrospinal venous insufficiency procedure.
As ethicists, scientists, and policymakers, what ought we do when public demands stray from scientific evidence? The chronic cerebrospinal venous insufficiency experience presents an opportunity to reinforce an infrastructure of trust, informed hope, and knowledge-based humility at the interface between science and society.
Public engagement requires trust. The challenges illustrated by chronic cerebrospinal venous insufficiency research demonstrate that sustainable trust in the public sphere must be cultivated proactively. Additionally, this research experience illustrates an opportunity to dedicate empirical focus to the complexities of trust relationships between the scientific community and the broader public.
Another facilitator to successful public engagement is informed hope. The scientific community should disseminate accessible information about research in a manner that privileges social responsibility over hype. Conscientious communications focus on incremental advances in science, caveats of research, and time frames for clinical applications.
Finally, to establish honest conversations that promote informed hope and build trust, researchers must approach the public—particularly patients who may have heightened stakes in the advancement of science—through a lens of knowledge-based humility. Knowledge-based humility is based on openness and reciprocity between collaborators, rather than a top-down assertion of expertise. In this manner, the lived experience of lay experts such as patients and their families would be honoured and productively guide the development of research.
Experiences in the neurosciences demonstrate that community engagement is a complex endeavour. The complexities of public scholarship can only be matched by its tremendous potential to celebrate pluralism with an emphasis on social responsibility and responsiveness in research.
Shelly Benjaminy is a bioethicist at the Shirley Ryan AbilityLab in Chicago, Illinois. @ShellyBenjaminy
Anthony Traboulsee is an Associate Professor of Neurology at the University of British Columbia and the Director of the Multiple Sclerosis Clinic and Clinical Trials Research Group at University of British Columbia Hospital. He is the Principal Investigator of the Canadian chronic cerebrospinal venous insufficiency clinical trial.
*A longer version of this reflection was originally published in Neuroethics: Anticipating the future (2017).