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NGS Leaders Blog

Nancy Kelley Steps Down as New York Genome Center Executive Director

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March 18, 2013 

Bio-IT World Staff : Nancy KelleyNancy J. Kelley, the founding executive director of the New York Genome Center (NYGC) and the person most responsible for conceiving and bringing the ambitious institute to fruition, is stepping down from her leadership role.

She will remain an advisor and a member of the Board of Directors.

“Working with the New York Genome Center and all of its supporters and partners has been an extraordinary experience,” said Kelley in a statement released today. “This is an exciting time in science and medicine. The Center is now well positioned to become a world-class collaborative center for translational genomic research under the strong leadership of [Bob] Darnell… I will always value my experience there.”

Kelley “was instrumental in nurturing NYGC from an idea to a reality, to the inestimable benefit of scientific research and New York City,” said Russ Carson and Ivan Seidenberg, co-chairs of the NYGC Board of Directors, in a statement. “We are extremely appreciative of her vision, persistence, and accomplishments, and we look forward to continuing to work with her as an advisor and a member of NYGC’s Board of Directors."

As Kelley detailed in a lengthy interview with Bio-IT World in 2011, she saw the faintest possibility of building a world-class genomics institute in the middle of Manhattan and ran with it. Working with Columbia University professor Tom Maniatis and a number of key administrative and philanthropic supporters, Kelley forged a coalition of 11 founding institutions, including most of the major research and clinical centers in and around New York City.

NYGC was officially launched in 2011. Many of the center’s foundational elements, including its Pilot Laboratory at Rockefeller University, the NYGC Innovation Center, and key technology partnerships, were established under her leadership. Kelley also oversaw the selection and build out of NYGC’s permanent facility at 101 Avenue of the Americas in New York City, which is scheduled to open this summer.

Late last year, NYGC appointed Rockefeller University physician scientist Robert Darnell as president and scientific Director.

Reached by Bio-IT World, Kelley declined to comment on the record other than to say she is looking forward to taking some time off. It is unlikely that NYGC will be her last contribution to the biomedical enterprise.

Ed Note: The Bio-IT World Conference in April 2013 will include a session on building out the IT infrastructure at NYGC.  

Putting Science on Screen: The Perfect 46

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 Editor’s Note: We are pleased to share a guest post submitted by Brett Bonowicz, Author and Director of "The Perfect 46". 

March 5, 2013 :  “The Perfect 46” is a film about the CEO of a personal genetics company and what happens when he creates a website that pairs individuals with their ideal genetic match for children. The CEO – Jesse Darden – bares some similarities to the brilliant game-changing innovators such as Steve Jobs or Mark Zuckerberg, and ties that entrepreneurial spirit to the fascinating world of direct-to-consumer (DTC) personal genomics. 

What would happen if a personality so tied to the identity of his company had the chance to change the nature of our relationships. What if facebook started telling us who we should be with? The script is written and is pretty good – of course, as the author, I’m a little biased. If we can raise enough money, we aim to start shooting this May and all going well, release the film later in 2013. 

As I begin to promote the film and raise funding, I have some trepidation about reaching out to the scientific community. Why should people that work incredibly hard to create the wonderful reality of tomorrow care about someone making fictional art?   

My best answer is that the reflection they might see of themselves in the film might spark debate. And perhaps not just within the scientific community, but with an entirely different audience that wouldn’t normally be engaged in such a discussion. theperfect46 

I started to think about where the film could go and where the two subjects – the genetics visionary and the social networking aspect -- might begin to overlap. As I began to formulate the film in my outline, I read a lot about the field of personal genomics. I found myself highlighting pages in books that came right out of my outline. Ideas that I thought might be science fiction were already becoming reality.

I seemed to be on the right track with the story, and every time I started to veer off into subject matter that was fantasy I would reign it back in because sticking closer to the reality was always more interesting. I discovered fascinating facts about eugenics and the very American history of how it began at the beginning of the 20th century.

By making the film as factually accurate as possible, the conversation that the film creates should, I think, spark something that a more futuristic, fantastic treatment perhaps cannot. The topics we cover in the film -- genetics, eugenics, the moral and ethical implications of a consumer genetics service, and the role of government vs. a DTC model -- are discussions that deserve to be out in the public. This is a film of the moment. We have an amazing opportunity to make something right on the cutting edge of what is possible in personal genetics.

Science is rarely, if ever, treated well in film. Outside the realm of documentaries, it is hard to find more than a handful of films that truly respect the scientific community. I am frustrated with that fact, and I cannot be alone in thinking that works like this have an audience and that they deserve to be made and to be seen.

I read the works of Arthur C. Clarke and I wonder why they never made it to the screen? I read the wonderful literature of George Dyson, and I can imagine a perfect film coming from the story of Project Orion. But where is it? Where are those films? If an audience can be found, I guarantee those films will start to crop up.

It’s been over 15 years since Andrew Niccol’s excellent, thought-provoking film Gattaca (tagline “There is no gene for the human spirit”) came to theatres. A lot of our perceptions about genetics have changed in those years. What we’re making can be looked at as a sort of prequel to Gattaca. We’re looking at the moment when society might begin to shift. We’re looking at the discussions and the realities of a service of this kind.

Please help us get the word out about this film. We are using the popular crowd-sourcing model via a website called Indiegogo to raise some modest funding to begin shooting the movie.

The fund-raising campaign is for 46 days, with the goal of raising $46 thousand. Please take a look at what we've been creating at: www.theperfect46.com 

I-Study: Genomic Interpretation - Who Will Pay?
During this webinar, members of the study review team present preliminary findings of the I-Study, conducted at the Harvard Medical School's 2011 Personalized Medicine Conference.
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