HIPAA gives us access to our test results -- does that mean it gives us access to raw genetic data from tests? Specifically, the raw DNA sequencing data used to render a diagnosis.
The "P" is for portability, and we want data access!
But just because we want data access doesn't make it legally so. John Conley in Genomics Law Report has an awesome write-up about access to raw genetic data, a new lawsuit w/ ACLU and Myriad, and the HHS's "guidance" on this issue.
Importantly, he discusses why we would should be worried about the process for how HHS has gone about this – via "governance by guidance" – and why this process is a concern for how regulations are being enacted and enforced.