Is Sir Tim Berners-Lee Right? Should Clinical Research Data Be Free?

The "Father of the Web" isn't anti-privacy, he's pro-science.

Sir Tim Berners-Lee, kind-of creator of the Internet and co-founder of the Open Data Institute, wants everyone to have free access to the Internet’s data. Now he’s urging governments to open up clinical data to the public in order to give the medical community a chance to do something great with it.

Speaking at Bloomberg’s London offices yesterday, Berners-Lee called for the creation of an Online Bill of Rights granting all individuals access to their personal information from the cloud and giving everyone the right to freely share data without fear of censorship. “Nothing should be censored by the Internet itself, unless it’s something that’s internationally considered illegal,” Berners-Lee said at Bloomberg. “It’s easier to run a business in a country where there is open data.”

In the United States, open access to scientific data is patchy. The Obama Administration has called for greater access to data from all federally funded studies, putting pressure on agencies like the U.S. Food and Drug Administration and the Centers for Disease Control and Prevention to make their data freely available. The U.S. National Institutes of Health have been required since 2008 to make their research data available to the public within a year of publication, and in 2013, the White House announced a policy expanding that requirement to all agencies using federal funds for research.

While the government is working toward the release of all clinical data, there’s been a rise in the number of open access scientific journals. Science publishers like PLoS and SpringerOpen are defined by their open-access stance. The PLOS website sums up the argument for wider data access nicely:

Data availability allows replication, reanalysis, new analysis, interpretation, or inclusion into meta-analyses, and facilitates reproducibility of research, all providing a better ‘bang for the buck’ out of scientific research, much of which is funded from public or nonprofit sources.

With open access, the hope is that making useful data available to more people who know what to do with it can only be helpful. Another champion of open access, Google co-founder Sergey Brin who has been diagnosed with Parkinson’s Disease, has poured over $4 million into the Parkinson’s Disease Genetics Initiative at 23andMe. This database collects genetic information shared freely from thousands of people with the disease, all of who, like Brin, hope that data could help save their lives.

“Clinical data should be available to research by default,” Berners-Lee said. “It’s such a valuable thing, the medical community could do such valuable things with it.”

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