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article imageWho has access to your DNA data?

By Tim Sandle     May 14, 2018 in Science
San Fransisco - Since 1983, for each baby born in the state of California, a sample of DNA has been taken by the government. Finding out where this biological sample is stored and who can have access to it is proving challenging.
The collecting and storing of DNA from infants sounds a little Orwellian, and understanding what happens to it is proving labyrinthian in its complexity, according to an expose from CBS News.
The research has discovered that California collects the biological samples from each child born in the state. The sample is taken as part of the Newborn Genetic Screening test program. This is a common test across the U.S., where a sample of blood is screened for a range of congenital disorders. The blood samples are taken in heel-prick tests.
The aim here is to enable care and treatment as early as possible, should a genetic disease be discovered. Most newborn screening tests are done by measuring metabolites and enzyme activity in whole blood samples collected on specialized filter paper.
The meal kit is personalized based on a customer s DNA. So a finer prick is required.
The meal kit is personalized based on a customer's DNA. So a finer prick is required.
Rice University
There is an important process associated with the testing. The California Department of Public Health notes that between 2015-2017, the state’s Newborn Screening test diagnosed 2,498 babies with a "serious congenital disorder that, if left untreated could have caused irreparable harm or death." What concerns many, is what happens to the sample after the life-saving tests have been completed.
The genetic material is then stored, for an indefinite period, in a state-run biobank. Here the material can be purchased for outside research, such as by academic institutions or by pharmaceutical companies.
When questioned by CBS, the Californian authorities states that each parent has the right to request that their child's sample be destroyed (where information is given to the parents after birth). However, the state is under no obligation to tell parents if the child’s DNA is sold to a third party.
Speaking on the matter, Dr. Fred Lorey, who is the former director of the California Genetic Disease Screening Program, said that the DNA samples were vital for scientific research: “They’re important because these samples are needed to create new testing technology.” He also added, when asked why the state sells samples to third parties: “It has to pay for itself.” Samples typically sell for between $20 to $40 per spot of blood.
The DNA samples are also accessible to law enforcement agencies and could be used in crime solving or in areas of common law, such as paternity disputes.
Following the CBS report, it has been noted that state residents do have the right to request that the state destroys the remaining sample; however, biobank website indicates that it "may not be able to comply with your request."
Where DNA is used for drug product testing and, perhaps one day, being used to develop niche medicines, the practice beyond the testing for genetic diseases does produce some issues of social policy and ethics that require answering. For more on the subject of DNA and human right, see the Digital Journal article "Think first before giving away your DNA."
More about Dna, Parents, Genetics, Babies, inherited
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