Non-therapeutic brain research with humans
Patients undergoing invasive neurosurgical procedures contribute significantly to advancing our understanding of the human brain and the functions that underlie the most complex of human behaviors. Patients having brain surgery for the implantation of a deep brain stimulators for treatment of Parkinson’s disease or patients in the epilepsy monitoring unit with electrodes implanted to localize seizure activity, for example, offer researchers the unique opportunity to peer into the brain—the chance to directly record, modulate, and study brain activity in pursuit of scientific questions. Piggybacking on surgeries to treat neurological conditions makes these basic science studies possible: they require invasive brain surgery, which is not ethical to perform for science alone. Over the past decade, these studies have not only shaped our understanding of neurological disorders but also unlocked the potential for new treatments for patients suffering from Parkinson’s disease, epilepsy, paraplegia, obsessive compulsive disorder and depression. But they raise persistent ethical questions.
Given that these research studies happen in clinical contexts, do patients understand the distinctions between research and care? Do patients, facing the risks and potential therapeutic benefits of brain surgery, adequately appreciate the risks and non-therapeutic benefits of the research? Given that this research involves a high prevalence of dual role physician-investigators, are patients unduly influenced or pressured to participate in research led by their own surgeons? How do patients think about their contribution to and participation in these studies, which come with no promise of personal clinical benefit? Our lab focuses on how these unique research contexts push us to rethink standard notions of benefit, traditional processes for consent, and the values that patients and investigators attach to basic neuroscience research.
Funding:
NIH BRAIN Initiative RF1MH121373
NIH BRAIN Initiative UH3NS103442
NIH BRAIN Initiative R61MH135106/R33
Ethics of Early Feasibility and Long term BCI Studies
Brain computer interfaces (BCIs) have the potential to revolutionize treatment for individuals with severe disabilities. Driven by advances in artificial intelligence and improved techniques for recording and decoding human brain signals, BCIs in laboratory settings have facilitated the translation of neural activity into speech, allowed for control of robotic limbs, and enabled paralyzed individuals to walk. All of these advances have been made with individuals who have adopted early versions of BCIs as part of an early feasibility study (EFS)—that is, early phase studies designed to test the safety of the device in humans. These EFS place high demands on participants (including brain surgery) and require years of intense involvement (many participants carry out weekly sessions for 5-10 years). They are often limited to laboratory environments or supervised sessions at home, and offer no promise of direct clinical benefit. Instead, this research asks individuals, all of whom have disabilities for which there are no sufficient alternative therapies, to undergo brain surgery to help develop a BCI which will potentially benefit others in the future. Perhaps unsurprisingly, these studies raise persistent ethical questions.
Is it permissible to enroll individuals in these studies without aiming to provide them with a benefit? Do participants understand the distance between early versions of these devices and ultimate commercially available therapies? How might current consent practices and cultural narratives around the hype and hope of neurotechnology influence participants’ motivations for enrollment? Should these devices be designed with participants instead of merely for them (yes), and what obligations do researchers have to engage with participants in device and task design?
Our lab focuses on how these questions could be addressed by (i) utilizing a disability justice framework, (ii) centering concepts like epistemic injustice and participant engagement, and (iii) reframing participants as partners with crucial epistemic contributions to the design and uses of BCIs.
Funding:
NIH BRAIN Initiative RF1MH121373
NIH BRAIN Initiative UH3NS103442
Community Partnered Neuroscience: The UCLA-CDU Dana Center for Neuroscience and Society
Engagement is increasingly recognized as a core feature of good research. While many other fields have embraced aspects of community based participatory research, many of the neurosciences have not. This is particularly true for basic neuroscience, which is often inspired by aspects of the human experience, but carried out in insolation from the people and social contexts in which these experiences have meaning. The UCLA-CDU Dana Center for Neuroscience and Society is developing a method of community partnered neuroscience, experimenting with ways that researchers and community members in south LA can collaborate to increase the benefits of neuroscience for all people. To this end, we are building the capacities of community members in south LA to join and impact neuroscience projects, and the capacities of neuroscientists to join and impact community projects. We host interdisciplinary fellowships, seed grants, and workshops open to the UCLA and Charles R. Drew University community, as well as south LA community members and organizations aligned with this mission. https://bri.ucla.edu/ucd-cns/ Dr. Feinsinger is Co-Director of this center, and lab members can participate in all activities.
Collaborators: Drs Helena Hansen, Denese Shervington, Amy Woods, Gina Poe, Felix Schweizer, Marco Iacoboni, Nick Shapiro, and Aaron Panofsky
Funding:
The Dana Foundation, Center Grant
Other Projects
Our lab also has other projects, all of which explore the impact of interdisciplinary collaboration in biomedical ethics. Those projects include:
A project using theories in philosophy of language to redefine the notion patient-centered communication
An project exploring the utility of virtue ethics in cutting-edge brain research
A project on the ethics of dual-use in neural device development
A series of educational activities aimed at teaching medical ethics through communication theory and palliative care. These include simulation sessions for second year medical students with standardized patients on delivering serious news, capacity evaluations, and goals of care discussions
A series of new courses for undergraduates which teach neuroscience as a core part of humanistic inquiry. These include classes which explore a topic of central importance to human life (e.g. “what is a memory”) through the lenses of neuroscience, philosophy, and social science.
