Protect Californian' DNA privacy

by jeeg 12. February 2015 22:15

 

The recent hackings of millions of consumers’ personal information from health insurer Anthem and hospital group Community Health Systems highlight the need to maintain the privacy of individuals’ health records. So it is welcome news that Assemblyman Mike Gatto, D-Glendale, has introduced a bill to protect the privacy of Californians’ blood and DNA samples taken at birth.

All states collect blood samples from newborns to test for a number of health disorders. But California is one of seven states that retain samples – without parental consent – for later research and one of four that charge fees to loan the samples to researchers. Parents may opt out of having their child’s dried blood-spot sample stored, but they must do so in writing, and many are unaware of the option – or even that the state keeps their children’s DNA in the first place.

Assembly Bill 170 would strengthen these notice requirements and require the state to honor the request of a parent or guardian to destroy their child’s blood sample. Adults aged 18 or older could also demand that their own sample be destroyed.

“Whenever data is stored, data can fall into the wrong hands. Imagine the discrimination a person might face if their HIV status or genetic predisposition to a mental disorder were revealed to the public,” Mr. Gatto said in a statement. “Parents should have the right to protect their children and people should have the right to control how their personal medical records are used once they reach adulthood.”

Screening for diseases at birth should not give the state free rein to claim that someone’s DNA is property of the government indefinitely, much less profit from it. People are free to volunteer use of their genetic material, whether to the government or private companies, but AB170 is a commonsense step toward protecting the privacy of those with concerns who feel otherwise.

Orange County Register Editorial

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