In April 2013, President Obama officially announced the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative , with approximately $110 million in funds slated for fiscal year 2014. Identified as an Administration “Grand Challenge,” the long-term aspirations are to:“accelerate the development and application of innovative new technologies to construct a dynamic picture of brain function that integrates neuronal and circuit activity over time and space. The goal is to build on the growing scientific foundation of neuroscience, genetics, physics, engineering, informatics, nanoscience, chemistry, mathematics and other advances of the past few decades, to catalyze an interdisciplinary effort of unprecedented scope.”
Descriptions of the Initiative emphasize the convergence of numerous technologies as playing a part in the trajectory of the research agenda. The White House Fact Sheet states that “great promise for developing such technologies [to treat neurological and psychiatric disease] lies at the intersection of nanoscience, imaging, engineering, informatics, and other rapidly emerging fields of science.” But to facilitate this, NIH acknowledges “researchers will first need a more complete arsenal of tools and information for understanding how the brain functions both in health and disease.”
The key investments to launch this initiative are to be directed through three core federal agencies: the National Institutes of Health (NIH), with a $40 million allocation for fiscal year 2014; the Defense Advanced Research Projects Agency, with a $50 million allocation; and the National Science Foundation, with a $20 million allocation. Private sector partners are the Allen Institute for Brain Science, the Howard Hughes Medical Institute, the Kavli Foundation, and the Salk Institute for Biological Studies. The White House website lists several components of the initiative, including key investments, strong academic leadership, public-private partnerships, and maintaining the highest ethical standards.
Planning is in early stages, with a BRAIN Working Group of the Advisory Committee to the Director (ACD) of the NIH formed to provide input into the development process. The BRAIN Working Group is charged with reviewing advances in neuroscience, identifying short, mid, and long-term science goals of the Initiative, and developing a scientific plan for achievement of those goals. The ACD has hosted four public hearings in San Francisco, New York, Minneapolis, and Boston to gather perspectives from the scientific community. Last week, the Working Group published an interim report with a list of nine high-priority areas for funding for FY 2014 with an “overarching vision … to combine these approaches into a single, integrated science of cells, circuits, brain and behavior”:
A final report by the BRAIN Working Group is expected in June 2014.
Parallels are already being drawn to the $3.8 billion, 10-year Human Genome Project (HGP) begun in the 1990s, culminating in the publication of the complete sequence of the human genome in 2003. President Obama himself noted in his February 2013 State of the Union address that “every dollar we invested to map the human genome returned $140 to our economy.” While the HGP had many successes, it also fueled many subsequent controversies, many of which took years to play out and some that remain hotly debated today. Two high-profile examples include patent protections for inventions resulting from the HGP (see the Supreme Court’s June 2013 decision in Association for Molecular Pathology v. Myriad Genetics ) and adequate privacy and genetic discrimination protections (see the Genetic Information Nondiscrimination Act ).
Recognizing the broader ramifications of such a massive federal undertaking, the President has reached out to another expert task force for input. Alongside the BRAIN Working Group, the President has also directed the Presidential Commission for the Study of Bioethical Issues to “explore the ethical, legal, and societal implications raised by this research initiative and other recent advances in neuroscience.” Specifically, the Commission is to “identify proactively a set of core ethical standards – both to guide neuroscience research and to address some of the ethical dilemmas that may be raised by the application of neuroscience research findings.” An August 20, 2013 public meeting of the Commission highlighted several core ethical concerns going forward, including privacy; data protection and management; animal and human subjects research protections; potential use for enhancement purposes; stigma and discrimination; and national security. Extensive blog coverage of the public event is available here , here , and here .
Given the nascent state of the BRAIN Initiative, the overall long-term allotment of funding for research into the ethical, legal and societal implications is unclear. For the HGP, this was between 3-5% of the total budget over the life of the project. Similar research support should be built in to the Brain Initiative as well in an effort to anticipate, and guide, the ethical, legal, and societal aspects that accompany such an endeavor.
The Commonwealth Fund (“Commonwealth”) has recently released its first-ever Scorecard , which provides a state-by-state comparison of the health care experiences of the 39 percent of Americans with incomes less than 200 percent of the federal poverty level. The report, titled Health Care in the Two Americas: Findings from the Scorecard on State Health System Performance for Low-Income Populations , finds striking disparities by income within and among states, and many news sources have quickly made these findings known to the public.
The purpose of the study was to identify opportunities for states to improve how their health systems serve their low-income populations and to provide benchmarks of achievement tied to the top-performing states. The report is based on thirty indicators of access, prevention and quality, potentially avoidable hospital use, and health outcomes, but does not analyze the potential effect of the 2010 healthcare law, the Patient Protection and Affordable Care Act (“ACA”). This law was designed, in part, to guarantee healthcare access for all Americans no matter where they live and the study’s lead author and Commonwealth’s senior vice president Cathy Schoen has suggested that “[w]e ought to be able to close the geographic divide … There is potential for a real leap forward.”
Significantly, Commonwealth notes that having low income does not have to mean below-average access, quality, or health outcomes. Further, the Scorecard finds much less state-to-state variation in health and health care experiences among people with higher incomes.
As the ACA continues to take effect, the report is optimistic that the Act “represents a historic opportunity for states to provide better health care to economically vulnerable people by providing resources to overcome the geographic and income divideespecially for states with high rates of poverty.” In light of the Senate’s recent 100-0 vote to avert government shutdown , the date on which health care exchanges set up under the Affordable Care Act will go into effect, October 1, looms ahead.
Photo, of a doctor’s office in New Orleans, courtesy of Bart Everson.