Launch of the California Genetic Privacy Network

by jeeg 9. December 2013 22:41

Consumers today are faced with almost daily risks to their genetic privacy.   A tsunami of personal genetic data is being created as genetic testing increasingly becomes an integral part of medical research and health care. The vast amount of genetic data being generated raises serious medical privacy concerns.  Many Californians are afraid that their genetic information will be used against them and are unwilling to participate in medical research or to be tested clinically, even when they are at substantial risk for serious disease.  The public simply does not trust insurers, employers and other entities with incentives to improperly acquire and use genetic information. 

 

Despite the passage of several new laws to protect genetic privacy, many remain unaware of their privacy rights, of where they are protected and where they aren’t.  It’s not difficult to ascertain why: there has never been a comprehensive public education program on genetic privacy.

 

That is why the Council for Responsible Genetics and the Alliance for Humane Biotechnology are pleased to announce the creation of the California Genetic Privacy Network; an ongoing project to educate Californians and the greater public about genetic privacy rights. 

 

The Network’s website will serve as a resource for Californian patients, consumers and other front line actors to have an informed understanding of their genetic privacy rights under California and federal law.  The California Genetic Privacy Network also offers in person and online educational consultations. 

 

Check out the California Genetic Privacy Network website today at:

 

www.geneticprivacynetwork.org

 

 

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