About

Welcome to the California Genetic Privacy Network!

We are at a critical time in the development of medicine:  the mapping of the human genome has provided powerful new tools to understand the genetic basis of disease and genetic tests can help diagnose genetic conditions, guide treatment decisions, help predict risk of future disease, inform reproductive decision-making, and assist medication selection. Americans are enthusiastic about the promise of genetic medicine; but are understandably fearful about how this powerful information can be abused. The sheer amount of genetic data being generated today, and its commercialization, raises serious medical privacy concerns.

Many individuals are legitimately concerned that their genetic information will be used against them and are unwilling to participate in medical research or be tested clinically, even when they are at risk for serious disease.  They simply do not trust insurers, employers and other entities with incentives to improperly acquire and use genetic information.

With genetic testing and genetic information increasingly pervasive in our daily lives, the Genetic Privacy Network serves as a resource for all Americans on their genetic privacy rights.  The Network serves to empower everyone in decision-making regarding their personal genetic information.

Explore our new in-depth report report: Do You Know Where Your DNA Is? Genetic Privacy and Non-Forensic Biobanks which explores the various forms of biobanks in the US, their privacy limitations, the current state of regulation and the need for reform.

Learn how to cope with a positive genetic test result- know your rights.