As stated in the note from the Sunlight Foundation′s Board Chair, as of September 2020 the Sunlight Foundation is no longer active. This site is maintained as a static archive only.

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Drug Co Reps Say Clinical Trial Data Should Remain Secret

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Two out of three of the panel participants at today's Food and Drug Administration (FDA) transparency hearing discussing whether data for unapproved drugs and medical devices should be made available to the public were pharmaceutical industry representatives.

As we reported in our investigation, Heart of the Matter, drug and medical device companies lobbied Congress to keep data secret for government-regulated clinical trials for products that don't make it to market.

Now the issue is before the agencies. An audience of about 75 people listened as the panel members discussed detailed case studies about whether and when the FDA or companies should make data available to the public. (The hearings were available via livestream here.)  For the most part, drug industry representatives stuck to the same arguments they made to Congress--that such data are proprietary and should remain secret.

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Victory! FEC Launches Data Catalog

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Earlier this year, I was invited to testify in front of the FEC on how they could improve their web presence. Together, we as a community built my testimony that I in turn, delivered to them. Whether it was our Redesigning the Government piece on the FEC, or the crowdsourced testimony, we delivered it fully(start on page 25 of that pdf file).

I'm pretty excited to see this note from Bob Biersack floating around the intertubes announcing the launch of fec.gov/data and fec.gov/blog -- the commission is calling their blog the "Disclosure Data Blog" where they'll be posting information and plans about the files they're producing and taking a more proactive approach towards disclosure.

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