Data Privacy:Possible, Impossible, or Somewhere In Between?

I’m Dr. Kevin Johnson, physician and informatics chair at Vanderbilt. @kbjvanderbilt on Twitter.

This episode covers the most requested topic we have had so far.  We have two of the world’s experts on the topic of data privacy on the show today: Dr. Ellen Wright Clayton and Dr. Brad Malin. They were incredibly generous with their time and had a lot of information to share with a very inquisitive and engaged group on this podcast.  Brad and Ellen are a dynamic duo in the world of genomic privacy and have literally been thinking about this topic their entire careers. There is NOTHING we could ask them that they couldn’t answer.  Thank you guys. You were honest, articulate, and wise. As always.

 

Our other guests included an amazing singer/songwriter duo:   Allisa Abeler and Hanna Smith, also know as The Daily Fare.  They were gracious enough to let us add their most recent HIT song (That’s what I’m predicting for them!) to this episode but even more impressive, they had a lot of stories and opinions to share about data privacy.  As songwriters, who tend to express emotions through their art, I wasn’t sure how they’d feel about the leaking of private information. You’ll enjoy hearing their thoughts about this topic, I’m sure!   You can hear their music at www.thedailyfaremusic.com/home.

 

The intro to this episode featured a former coworker and patient at VUMC, Bernadette Ruby, a Senior Learning Experience Designer and fantastic photographer from Vanderbilt.  She has a very complicated medical history and is one of those people with a diagnosis so rare that everyone in medicine wants to learn from her. That comes at a price, as you’ll hear.

Finally, I was lucky to get Sarah Bland back on this episode.   She was a FIRECRACKER, but then when isn’t she. Sarah, you rock, and you help us keep the conversation real.  Thank you for coming on.

What did we cover, you ask? Deidentification, anonymization, HIPAA (not a female Hippo!) Genomics, genetics, privacy, ethics, law, crime, Minority Report, little white lies that some agencies can tell us…..yup, pretty much everything about this topic in some form.