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 individuals 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. Genetic Alliance and other organizations are working to have these protections passed. You can follow this effort at Genetic Alliance's website.

Internal Links

• Barriers to Rare Disease Research
• Benefits of Collaboration with Advocacy Organization Community
• Blood and Tissue Banks
  • Genetic Alliance BioBank
• Consumers and Researchers
• Educating Membership about Research
• Facilitating Quality Research
• Funding Research by Others
• Getting Needs onto the Research Agenda
• Orphan Drug Application
• Patient's Bill of Rights
• Promoting Research
• Registries
• Research Models
  • Research Model 1: Recessive Disorder
  • Research Model 2: Chromosomal Disorder
  • Research Model 3: Dominant Disorder