Recent news headlines suggest that vast amounts of our private physical health, mental health, genetics, and fitness data is being collected and sold without our knowledge or consent. Additionally, law enforcement has been requesting (sometimes via subpoena) and buying this data. Unfortunately, too many people assume this information is covered by HIPAA or other privacy laws, when in fact, HIPAA is a narrow law that doesn’t protect much, and there are no other statutes prohibiting this. It is these misunderstandings that have gotten us to a point of feeling used, abused, and confused.
This data is being used to profile and target us, and it can easily be weaponized against us. That’s why we have a right to know what data is being collected. Beyond this, big questions abound. Who has our data and how many places does it end up? Who is selling this data and profiting from it? Who is aggregating it? We also want to know who’s buying this data and how they are using it!
More than that, we want to know how this information could be used to our detriment – prosecution, uninsurability, higher premiums, pharmaceutical companies targeting drug ads to us, custody battles, power of attorney, genetic infringement by disease or relation, inheritance disputes – and as the list of concerning scenarios grows, the myriad implications have not fully surfaced.
This event will answer some of the following questions:
How does HIPAA protect us? Where does HIPAA not apply? What other laws exist?
What are we agreeing to when we accept ‘terms and conditions’?
Who is brokering the data? Can we follow the money?
Are there any limits on how this data might be collected and aggregated?
Should we have control over who can receive our information?
How to avoid having your “data snatched”?
Date: May 25, 2023
Time: 11am PT (90 mins including Q&A)
Alexa McCulloch, Moderator
Felix Bustos III, CEO and Co-Founder, ZB Tech (HelenHealth)
Rene Quashie, Vice President, Digital Health at the Consumer Technology Association
Sarah Robinson, Former Head of Trust at Meta; Trust, Privacy & Global Transformation Advisor