Genetics and Health

Genetic Privacy in Minnesota

by Hsien Hsien Lei, PhD on April 12th, 2007

DNA is being collected from birth. In Minnesota, blood samples are collected from all newborns unless parents specifically request an exemption. But, these samples cannot be used for research or any other reason not related to disease testing unless the parents sign consent forms.

Genetic privacy advocates think that no blood samples should be taken at all unless parents “opt-in” but if people are not automatically included, screening rates are proven to be lower; Minnesota is opt-out and tests more than 99.5% of all newborns, Maryland is opt-in and tests less than 97%. Samples for research are still opt-in which may increase administrative costs and make it more difficult for studies to be conducted since fewer samples will be available.

The new rules will hopefully ensure that newborn blood samples will be destroyed after necessary disease screening is performed. That might work for now but once whole genome sequencing is readily available, destroying blood samples will be too late since DNA analysis can be performed so quickly.

Gabriel Castro said nurses and other caregivers at the maternity ward seemed baffled by his request to opt out of the screening for his baby girl this February. He worries about security. If credit card data can be stolen, he said, why not his daughter’s genetic information?

“It’s more valuable and precious to me than a credit card,” he said.

You can try protecting your daughter’s DNA now, Mr. Castro, but chances are none of us can keep our DNA safe for much longer. We may not even want to once personalized medicine is developed that allow us to use our genetic make-up to receive better medical care.

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POSTED IN: General Genetics and Health