Resources

Protecting Your Genetic Privacy

Many Californians continue to resist participating in genetic testing and research because they remain convinced that protections against the improper use of genetic information are not in place and that they will be forced to trade their medical privacy for the benefits of health care or participating in cutting edge research. According to a recent Cogent Research survey, when asked whether their concerns might prevent them from having some type of genetic test in the future, the percentage of people that responded in the affirmative rose from 30% in 2006 to 37% today.  Moreover three out of four people (77%) say they are unsure whether their genetic privacy is protected.  Fewer than one in five people (16%) are aware of any laws that protect the privacy of their genetic information.  An additional 8% assert that no such protections exist.

And it is not just the private citizen who is unclear about genetic privacy protections but medical professionals as well.  A striking 81% of physicians said they are unfamiliar with genetic privacy laws.  Indeed, a study in the Journal Genetics and Medicine found that the more concern with genetic discrimination, the less likely a physician would refer; 11% of physicians cited this reason for nonreferral.

There is no comprehensive genetic privacy law in America today.   While strong protections exist in some areas of consumer life, others areas receive weak to no protection at all.

The resources in this section will help you protect your genetic privacy.

Spread the word!  Use this flyer to help teach your friends about genetic privacy protections.

Genetic Privacy and the Law (Flyer)

What do Californians know about their genetic privacy rights?  The statistics below will shock you.

Genetic Privacy Laws Lack of Public Knowledge

Want to teach about genetic privacy rights in California?  Use the handy power point presentation below.

Genetic Information Nondiscrimination Act (PowerPoint Presentation)