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In our latest edition of “The So What ([link removed]) ,” DQC’s Jenn Bell-Ellwanger and Paige Kowalski are examining recent announcements from Secretary of Health and Human Services Robert F. Kennedy Jr. to create a “disease registry” (his term).

DQC has long advocated for data systems that securely bring together individual data across agencies and over time so that leaders can understand how state and federal services impact communities and how to improve them.

But what’s being suggested here is the opposite. A registry of this nature is not voluntary or the result of receiving benefits and could be used to potentially harm the people whose data has been contributed.

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