Concerns

The Genetic Information Nondiscrimination Act (GINA), the California Genetic Information Nondiscrimination Act (CalGINA), and other federal and state laws described on this site offer important protections to all Californians to ensure genetic information is not misused.

However, there is still no comprehensive genetic privacy law in California or the country as a whole, and existing laws are incomplete. Ten years after the mapping of the human genome was completed, the genetic revolution has led to a tsunami of DNA data in a variety of contexts that remain still largely unprotected. As more and more of this personal information becomes public knowledge, it can be misused and even bought and sold by commercial companies interested in predictive information about an individual’s future health status.

Systematic violations of the expectations of people whose personal health information is being used without their consent is just wrong. It’s a violation of basic human rights. Indeed, a recent survey by Cogent Research found that 71% of  Californians are concerned about access to and use of their personal genetic information.

Throughout this section of the site you can learn about particular areas of concern ( that are not covered in more depth elsewhere on this site ), where limited genetic privacy protections require greater patient and consumer vigilance.  Other sections of this site offer