NEW YORK (GenomeWeb News) – Two bioethics policy advocacy groups have teamed to create a resource to educate the public in California about genetic privacy rights that citizens have under the law.
The Council for Responsible Genetics and the Alliance for Humane Biotechnology have launched the California Genetic Privacy Network, CRG said yesterday. The aim for the network is to serve as a resource for patients, consumers, and activists, and it will provide information about genetic privacy rights under California law, including in-person and online educational consultations about these issues.
CRG said genetic data raises serious privacy concerns, and that many people are reluctant to participate in medical research or to take medical genetic tests because they worry that their information may be used against them in some way.
"The public simply does not trust insurers, employers, and other entities with incentives to improperly acquire and use genetic information," CRG said.
These attitudes persist even though laws have been passed to protect genetic privacy, particularly in California, which in 2011 passed a law to buttress and expand the protections of the Genetic Information Nondiscrimination Act of 2008 by including life insurance, housing, and employment as areas in which genetic information may not be used to make decisions.
The same California lawmaker who proposed the bill to expand the GINA protections, State Sen. Alex Padilla, earlier this year introduced another bill that would make it illegal to collect, analyze, transfer, or store an individual's genetic information without that person's approval.
CRG said the reason the public is wary, even with the California law, is because they are not aware of it, due to the lack of "a comprehensive public education program on genetic privacy."
The Genetic Privacy Network website is an attempt to get that information out to the public. It includes resources such as a set of tips for how individuals can protect their privacy if they participate in clinical research, use consumer genetic tests, or buy insurance or start a new job.
The site also explains the kinds of concerns the public has about biobanking, newborn screening, covert DNA collection, and commercial genetic testing, as well as information about a range of current federal and state laws that impact how genetic information may be handled or used, and how it is protected.