Two weeks after Robert B. Darnell, MD, PhD, began his tenure as the New York Genome Center’s (NYGC) president, CEO, and founding scientific director in 2013, he realized he was in love with his new job.
The neuro-oncologist and neuroscientist had been actively involved in founding the nonprofit venture in 2011, bringing academe, clinical medicine, and industry together to advance genomic research.
However, he had no idea at the time that it might lead to a position that would allow him to do what he’d wanted to do his entire career — marry science with clinical research.
“The love affair began when I knew that this was a chance not to do good in just a utilitarian space for science, but also to do good for humanity in a clinically relevant way, and that humanity being New York is the humanity of the world,” he said during a telephone interview with MedPage Today.
He said that although the center’s institutional and individual membership had extended beyond the metropolitan New York area, and its work was global, the diversity of the city’s population made it the perfect setting for gathering genomic information.
Collaboration Is Key
Darnell also credited altruism and collaboration as critical components in making NYGC work, noting the dual meaning of its being dubbed “The Manhattan Project.”
In February, as part of President Obama’s Precision Medicine Initiative, the NYGC joined with one of its corporate supporters, IBM, to use the latter’s Watson supercomputer to create a national tumor registry matching genetic characteristics with available treatments for patients.
The project will initially recruit 200 patients from such New York hospitals as Memorial Sloan Kettering Cancer Center and Columbia-Presbyterian who have not responded to other therapies, and will involve whole genome sequencing of some 22,000 genes and studying various aspects of DNA.
Eventually, it is expected that the project will expand to about 100,000 patients annually with the registry available to those physicians whose patients are participating.
One year ago, the NYGC also made headlines when Nobel laureate Harold Varmus, MD, made his surprise announcement that he would be stepping down as director of the National Cancer Institute to set up a laboratory at Weill Cornell Medical College and join NYGC’s faculty as senior associate core member — a major recruitment for Darnell.
The Center currently has a staff of about 200, with many of its researchers holding dual appointments with leading academic institutions. It is located at 101 Avenue of the Americas — where Soho, Tribeca, and Hudson Square neighborhoods intersect — with 170,000 square feet spread over seven floors.
Early Success
Last year, NYGC was involved in 729 projects involving more than 300 researchers and 85 institutions in nine nations, focusing on glioblastoma, breast cancer, melanoma, lymphoma, pediatric neuroblastoma, asthma, autism, schizophrenia, Alzheimer’s, and other diseases. It sequenced and delivered 15,675 samples.
Current grants and contracts include:
- $40 million from the National Human Genome Research Institute to create a Center for Common Disease focused on autism
- $13.5 million from the National Heart, Lung, and Blood Institute for whole genome sequencing
- More than $55 million raised as a matching grant requirement for a special New York state appropriation supporting genomic medicine
- $100 million challenge grant from the Simons Foundation and Carson Family Charitable Trust to match each dollar raised by NYGC over the next 3 years
- PCORI (Patient-Centered Outcomes Research Institute) contract with a consortium of 10 medical institutions to centralize clinical data among numerous hospitals and healthcare providers to enable research and analysis providing evidence-based information to make informed decisions
Darnell explained that NYGC began as a collaborative effort among leading New York-based medical and academic institutions and industry to translate genomic research into clinical solutions. (Indeed, the Center’s board of directors is essentially a list of their top officers, along with representatives of the city’s financial sector.)
He said that he and Tom Maniatis, PhD, a molecular biologist interested in the intersection of science and medicine, were exploring the pathophysiology of amyotrophic lateral sclerosis shortly after Maniatis left Harvard for Columbia, and the scientist inquired about using a genome center.
Big City, No Genome Center?
“I told Tom that New York didn’t have one, that most institutions had small core facilities, and he suggested that pooling resources would be cost-saving for all involved,” Darnell said, noting that his laboratory at Rockefeller University was interested in functional genomics, not just the DNA itself, but how genes are expressed.
Darnell’s research includes exploring “dark matter,” the regulatory portions of the human genome, and his work with rare autoimmune brain diseases led to development of the HITS-CLIP (high-throughput sequencing of RNA isolated by crosslinking immunoprecipitation) method to study RNA regulation.
“Tom got involved with a small group of scientists and we brought Tom’s vision to a number of philanthropists who initially held back and said they might support creating a 501(c)3 for the good of the city if we could show that academic centers and hospitals would buy into it,” he continued.
This led to a push by scientists throughout the city to convince their respective administrators to get aboard, resulting in 12 institutions contributing $2.5 million each ($30 million) for the seed money that eventually swelled to more than $200 million though philanthropy.
Seeing Into the Future: Primary Care and Eye Specialist Collaboration for Patients with Diabetes
Darnell added that although the center grew organically from New York-headquartered institutions, it now has deep collaborations with Stanford University, the University of California Los Angeles, and the University of Washington in Seattle, and had actually recruited as a faculty member its first West Coast-based researcher.
He said that creating NYGC involved “bringing together the altruism of a scattered community doing good in narrow spaces,” meaning it required harnessing the altruism extant in individuals and individual institutions into a collaborative entity that is much greater than its parts through technology and researchers united to solve diseases “ethically, equitably, and urgently.”
The Family Business
Biomedical research is the family business for Darnell who, in his spare time, is a cellist and triathlete. His father, James E. Darnell Jr., MD, an emeritus Rockefeller University faculty member and a pioneer in RNA research, received both a Lasker Special Achievement Award and National Medal in Science in 2002.
His wife, Jennifer Darnell, PhD, is a Rockefeller professor specializing in Fragile X syndrome research, and both her parents were researchers.
Making it three generations, the Darnells’ daughter is currently working on a PhD in molecular and cellular biology at Harvard, after having won second prize in the Siemens Competition in Math, Science, and Technology while in high school. Their two older sons are pursing education in biomedical ethics and law, and physics and philosophy. And their youngest son, who’s a college freshman, is also a cellist just like his dad.
