“The human brain is the most complicated biological structure in the known universe. We’ve only just scratched the surface in understanding how it works – or, unfortunately, doesn’t quite work when disorders and disease occur”- National Institutes of Health Director Francis S. Collins, M.D., Ph.D.
Bearing close to billions of neurons and trillions of synaptic connections, the human brain continues to be one of the most complex and mysterious entities in the fields of science and medicine.
With the increase in the onset of major neurological disorders over the past two decades, both time and resources allocated towards the study of neurological disorders and neural anomalies have tripled. However, despite the many advances made, underlying causes for many neurological disorders continue to elude researchers.
Recognizing this issue, President Obama launched the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative in 2013. This initiative focuses on aiding researchers in gaining further insight into neurological disorders, such as Alzheimer’s, Parkinson’s, depression, and traumatic brain injury, through a more dynamic understanding of brain function and behavior and the development of innovative technologies by the year 2025.
Additionally, the BRAIN Initiative has focused on further advancing its goal by implementing a data-sharing policy between researchers. Sharing data across studies will accelerate the spread of knowledge and foster an environment committed to the growth and development of health-related knowledge and technologies in the medical community.
Currently, the BRAIN Initiative is funding the following seven data repositories:
- NeMO (The Neuroscience Multi-Omics Data Archive; for multi-omics data)
- BIL (The Brain Imaging Library; for confocal microscopy brain imaging data)
- DABI (Data Archive for the BRAIN Initiative; for invasive human neurophysiology and electrophysiology data)
- OpenNeuro (For magnetic resonance imaging (MRI) and other neuroimaging data)
- BossDB (Block and Object Storage Service Data Base; for electron microscopy and x-ray microtomography data)
- DANDI (Distributed Archives for Neurophysiology Data Integration; for cellular neurophysiology data)
- NEMAR (Neuroelectromagnetic Data Archive and Tools Resource; for electroencephalogram (EEG) and magnetoencephalography (MEG) data)
The BRAIN Initiative encourages all researchers to upload their datasets to these and other existing data-sharing platforms. In addition, to further incentivize data sharing, the initiative also provides funded research opportunities for researchers willing to upload their data to at least one of the seven currently funded data repositories. This is an effort to ensure the growth of the data-sharing ecosystem and increase the amount of neurological data, with the potential to grow into a collection akin to that of the Human Genome Project.
Although neurological disorders have increased in alarming prevalence to date, the availability of critical neurological information has the potential to fuel the development of new technologies and effective treatments. However, ethical concerns could stymie data sharing.
For example, patients may worry about the privacy of their neurological data. Many data repositories provide the tools necessary to maintain the privacy of patients, but this may not be enough, and there could be other issues or concerns that disincentivize data sharing. As such, further investment in identifying and addressing those issues is necessary.
Baylor College of Medicine is leading a new project called BRAINShare, which aims to do just that – identify challenges and concerns and generate empirically-informed policy to practice options that facilitate responsible data sharing within the BRAIN Initiative. This project works to shape future policy and practice in a way that ensures that research produced by the BRAIN Initiative is shared in a manner that both preserves privacy and is ethically responsible.
With every upload of neurological data, the race to uncover the mysteries of the human brain is one step closer to completion.
-By Sudhanvan Iyer, summer intern in the Center for Medical Ethics and Health Policy at Baylor College of Medicine; Iyer is also a junior at the University of Texas at Austin majoring in neuroscience with a concentration in the behaviors and cultures of a healthcare system.