Response to the Proposed Update to the NIH Genomic Data Sharing Policy’s Access Model for Genomic Summary Results

I strongly support NIH’s effort to make genomic summary statistics more widely available. This is an unqualified good for lifesaving scientific research.

I strongly oppose the proposal to lock summary statistics behind a click-through agreement. This will slow projects that might use these data, costing money and delaying scientific research. A balanced risk management analysis should show that (1) there is little risk to misuse of summary statistics, and (2) a click-through agreement provides zero meaningful reduction to risk.

A click-through agreement provides zero protection against nefarious actors. It only provides costly “security theater” and introduces unnecessary barriers to the full utilization of these datasets. 

I also oppose an alternative suggestion to require use of a secret API key obtained through a click-through agreement. In my experience as a researcher and educator, getting these keys to work is usually one of the most difficult parts of learning how to use an authenticated API.

In summary, requiring a click-through agreement costs much and accomplishes little.

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