Questions about H98 – VT Disease Registries Bill

Questions for legislators…

1. What is the intended use of these registries? What do you envision these data to be used for?

2. Vermont have very strict laws, stricter than HIPPA in some instances to protect Private Medical Information and require Consent to Disclosure when it is shared, why this?

3. Once data is entered into another states system, how do we know where it will end up?

4. Why are Vermonters not being asked their permission before such data are collected?

5. How will the state protect persons with these health conditions (cancer/HIV) or treatment status (vaccination) data from discrimination if the data are breached?
H98 as written has only one consequence and that is loss of employment (see DOH policies submitted 3/13/15).

6. Why are there no penalties for breach of data applied equally across databases?

H98 only offers privacy (penalty for breach) to HIV positive persons, but not for other conditions (cancer, HIV) or treatment statuses (vaccination) – see bill as passed committee.

7. Are you aware of all of the recently documented data breaches (see examples below)?

Health Data Breaches 2010-2015

VCVC H.98 Testimony 3-12-15

Related reading:

Unvaccinated Families’ Addresses Should Be Made Public | TIME

The National Electronic Vaccine Tracking Registry: How the Plan to Force Vaccination Gave Birth to the National ID, A Government Health Records Database and the End to Medical Privacy. National Vaccine Information Center