Health IT

Questions raised in White House BRAIN initiative Twitter Q&A focus on patient benefits, sequestration

President Barack Obama’s announcement detailing the $100 million project to map the human brain has caused ripples of excitement through the biotech, big data and epatient communities. But that excitement has been tempered by a certain amount of trepidation over how this project will impact life science researchers counting on government funding for their own […]

President Barack Obama’s announcement detailing the $100 million project to map the human brain has caused ripples of excitement through the biotech, big data and epatient communities. But that excitement has been tempered by a certain amount of trepidation over how this project will impact life science researchers counting on government funding for their own research coupled with the effects of sequestration.

In a live streaming discussion with  NIH Director Francis Collins and DARPA director Dr. Arati Prabhakar, questions raised on Twitter ranged from whether there would be a role for epatients to play and whether the findings will be made publicly available to budget concerns. Here are some of the highlights.

How can #patient communities be involved? And what patient-relevant outcomes can they expect? When? #BRAIN #WHChat #medicalresearch

Collins said the working group would need the support of patient advocates for this enterprise, just as the human genome project relied on support from patient advocates.

Within DARPA,Prabhakar said the project was just one part of a broad range of what it’s doing. Addressing the question of where the money is coming from, Collins said that most of the funds coming from the NIH are coming from Blueprint Neuroscience Research Fund, which represents about 0.3 percent of its funding. There’s also money coming from non profit institutions. Here’s some of the breakdown:

sponsored content

A Deep-dive Into Specialty Pharma

A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.

  • DARPA: $50 million
  • NIH: Blueprint Neuroscience Research Fund + discretionary funds: $40 million
  • National Science Foundation: $20 million
  • Howard Hughes Medical Institute $30 million annually

For a more detailed breakdown, follow this link.

“We felt this was the perfect moment to convene the perfect dream team,” Collins said. The NIH working group, led by Dr. Cornelia Bargmann of Rockefeller University and Dr. William Newsome of Stanford University, will give detailed scientific goals and develop a multi-year plan for achieving those goals with timetables, milestones and cost estimates this summer.

Still the debate continued on Twitter where scientists expressed concern about the effects of sequestration

 

 

And that spurred Collins to emphasize the long term benefits that have sprung from the $3 billion investment in the human genome project. “This creates the opportunity for breakthroughs in Alzheimer’s Disease, Parkinson’s Disease, autism. “It’s not like we are putting this money somewhere where it doesn’t belong. Right now seems like the wrong time to put this on hold.” There were also a few questions about what if any information from the project would be made available to the public and when that would happen.

 

Another member of the Twitterati wanted to know about the ethical implications and who would look out for public safety.

Collins said the president would ask the government bioethicist to look into it.”I totally appreciate the importance of this.”

 

Collins said there were no immediate plans for an incentive prize but would welcome ideas for some, particularly when some of the data from the BRAIN initiative is made available to the public.