Genetic Privacy
HIPAA
The Health Insurance Portability and Accountability Act includes some protections of fair and appropriate use of genetic information. Enacted in 1997, it has been modified, most recently to protect patients from having their contact information disclosed to companies who wish to advertise to them based on the prescriptions they have purchased. (The Act now explicitly prohibits pharmacies from selling contact information for the purpose of marketing.)
More recently bills have been introduced in the US House and Senate explicitly designed to address genetic discrimination. The Genetic Alliance and other groups are working to have these protections passed. You can follow this effort at Genetic Alliance's website.
» Promoting Research on a Disease
Privacy Policy -
Disclaimer -
Funding
Maintained by the Genetic Alliance.
The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups.
Send feedback about the Interactive Guide.
SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!