Building the Foundation for caBIG
(This is part 2 of 2 of a series of articles excerpted from "Georgetown on Front Line of Effort to Create 'Cancer Worldwide Web'" in the Spring/Summer 2009 issue of Georgetown Medicine Magazine, click here to read Part 1)
Due to the vast amounts of proteomic and genetic information generated by cancer research, researchers today require a technical tool to assist them in collecting and sharing this data. The Cancer Biomedical Informatics Grid (caBIG), being developed under the direction of the National Cancer Institute and the Center for Bioinformatics, is just this. Known as the “cancer worldwide web,” the project is being undertaken in part by the Georgetown University Medical Center. More than just a scientific achievement, the developers of caBIG hope that it will significantly change the traditional approach to research, in that data sharing will become the norm.
“CaBIG shouldn’t only be seen as a technical achievement,” said Baris Suzek, MS, associate team lead of bioinformatics, and research associate for Protein Information Resource. “Working out new policy is also a major driving force and focus for caBIG.”
Yet while some applaud the increased channels for collaboration, the matter of intellectual property rights looms.
“Who owns and how do we protect intellectual property?” said Robert Clarke, PhD, DSc, interim director of Georgetown's Biomedical Graduate Research Organization (BGRO). “How do you share your work without putting it at risk? And at what point in a study do you expose the data for others to work on? Do you get recognition for it? Who has rights to publication?”
“All of this greatly affects peoples’ careers,” he added. “Maybe because you as a scientist share something you’ve worked on, someone else will be inspired to make it forward and find out the key data before you do. This is no small feat.”
This is what Suzek and other developers of caBIG see as perhaps the most obvious hurdle.
“The biggest step now is asking researchers to participate in serious academic data sharing,” said Steve Moore, director of Advanced Research Computing (ARC). If researchers remain, as they often are now, hesitant to share their data before they have published, that would defeat the purpose of caBIG. The project is envisioned as a hub of raw information, rather than another catalog of research papers.
Even if researchers are willing to share their data, many are reluctant to change they way they collect and aggregate it. Jieping Li, an analyst and programmer for the clinical trials workspace of caBIG, explained that researchers’ individual preferences present yet another obstacle to the widespread acceptance of caBIG. Widespread acceptance, she said, will take time.
“CaBIG still needs time,” said Jieping, “but people will eventually realize how useful it will be and appreciate the effort.”
Another potential roadblock is the technology itself. As researchers’ knowledge of cancer grows, so does their demand for technology to accommodate the data. Jieping pointed out that the rapidly evolving and growing computational industry has introduced delays in the development of caBIG as new features are added to each version.
Beyond these issues is perhaps the most delicate of all: patient confidentiality in the context of all this shared information.
“There is an entire series of peripheral issues that have nothing to do with how we do science,” said Clarke. “They have to do with patient confidentiality. Related challenges are the ethical and societal concerns about what this means for someone’s health care,” Clarke said. “If a person walks into physician at 10 years old and is identified to be an inheritor of BRCA1 gene [an early onset breast cancer gene], and now we know their lifetime risk is such and such, what are insurers going to do with that?”
Because of the delicate nature of the data, all the servers are housed at Georgetown University under surveillance, according to David Cafaro, systems administrator/analyst for ARC. Protecting both patient and researcher data is one of the highest priorities for caBIG researchers, and the issue is one that continues to be subject to vigorous discussion and scrutiny within the caBIG community.
Future of caBIG
As caBIG inches closer to completion, there is undoubtedly much change on the horizon. New policy and intense focus will be necessary for achieving this goal.
“The changes we are seeing require a new way of approaching research,” said Cafaro.
For the last 250 years or so, researchers have worked alone or with their own labs to bring about advances. Today, major breakthroughs are increasingly accomplished through collaborations among various laboratories and researchers.
“You can see this change unfolding even in the way that the [National Institutes of Health] delivers grants. Now we can have co-principal investigators so they get comparable recognition, because it’s understood that one person can’t do it all on their own anymore,” Clarke said.
New skills are required for success in a world of highly collaborative research and individualized medicine.
“Nobody’s trained now for this new world,” said Clarke.
Researchers must be trained to efficiently apply quantitative data to a biological system as our focus continues to move toward individualized medicine. At the same time, it is essential that physicians and researchers continue to ask the right questions to inform their decisions of how data is interpreted and applied.
“We at Georgetown don’t want to sit and wait for this to happen,” said Clarke. “We want to be in there. Georgetown is a perfect place to begin to form the ethical, legal, as well as the scientific discussions when it is time to do that.”
By Christine Cascella Reider and Yuse Lajiminmuhip, excerpted from the Spring/Summer 2009 issue of Georgetown Medicine Magazine.
