Open-Sourcing a Treatment for Cancer : The New Yorker

abernard102@gmail.com 2014-02-28

Summary:

"Elana Simon was given a diagnosis of a rare form of liver cancer at the age of twelve. Six years later, a few months shy of her high-school graduation, she is not only a survivor but a certified cancer researcher: today, she published an article about her disease, fibrolamellar hepatocellular carcinoma, in Science, one of the world’s most important scientific journals. One of the unique issues that Simon and others with extremely rare illnesses face is that there’s often not enough data to know exactly how to treat them. There are approximately two hundred and thirty thousand new cases of prostate cancer each year in the United States, compared to roughly two hundred new cases of fibrolamellar. This means that doctors know far less about the progression of rare diseases—and, because there are so few cases, they are often misdiagnosed. Meanwhile, drugs for rare diseases are often more difficult to develop, because sample sizes for experimental trials are necessarily smaller. The paucity of data that could help treat rare diseases is exacerbated by doctors’ reluctance to share what little information does exist, because hospitals tend to compete with one another rather than collaborate. For instance, if a hospital treats a young child with an uncommon ailment, the data it collects in the process often goes unseen and unheard of by doctors at other hospitals. Hospitals often keep data and cell culture to themselves, as anyone who has read Rebecca Skloot’s 'The Immortal Life of Henrietta Lacks,' which documents how cells from the tumor of a poor farmer were used extensively in medical research over the past half century, might realize. As a high-school student, Simon worked to understand her own disease and volunteered at Mount Sinai Medical Center. Before long, she realized that simply finding and aggregating data was deeply important. With the help of a friend and the surgeon who treated her at Mount Sinai, Simon set up a lab at Rockefeller University, where her father is a biologist, and began collecting cancerous tissue from several other patients facing fibrolamellar for the study published today. The sample size was small—just fifteen subjects—but the data was astonishingly clear and consistent: a genomic analysis revealed a single common gene mutation in the tumor of every patient ... Simon’s experience also led her to spend the past year developing the Fibrolamellar Registry, a Web site where fibrolamellar patients can share their medical data ..."

Link:

http://www.newyorker.com/online/blogs/elements/2014/02/open-sourcing-cancer.html

From feeds:

Open Access Tracking Project (OATP) » abernard102@gmail.com

Tags:

oa.new oa.comment oa.medicine oa.biomedicine oa.crowd oa.lay oa.open_science oa.data

Date tagged:

02/28/2014, 14:10

Date published:

02/28/2014, 09:10