Storage of Newborns’ Blood Samples Raises Privacy Concerns

Storage of Newborns’ Blood Samples Raises Privacy Concerns

May 12, 2010

The Globe and Mail - It’s a routine test conducted on newborns – a quick needle prick to the heel to test for a range of health disorders and diseases before an infant is discharged.

But the newborn screening procedures, which exist across North America and most of the developed world, have run afoul of privacy advocates because the genetic material collected from infants when blood is drawn is routinely used for other purposes, chiefly medical research.

Millions of infants’ blood samples – along with their names and birthdates – are stored on information cards in laboratories across Canada. What has riled civil libertarians and privacy advocates is that parents aren’t told that their babies’ genetic blueprint will be stored indefinitely, and perhaps used for research purposes.

Instead, parents are told the blood samples are crucial to test for disorders such as hypothyroidism, and more recently, cystic fibrosis.

In British Columbia, the B.C. Civil Liberties Association has helped launch a complaint with the province’s privacy commission on behalf of a Vancouver parent who said the practice is a breach of privacy, and wants all blood cards destroyed if the parents didn’t give consent for their storage.

British Columbia stores the genetic information of about 800,000 infants.

David Eby, executive director of the B.C. Civil Liberties Association, said the province doesn’t have the right to keep this personal biological data indefinitely. Mr. Eby said health authorities have a duty to inform parents that the so-called blood spot cards are used for purposes apart from testing for illness.

“We think that patients – when they’re dealing with their medical practitioner, when they’re dealing with doctors – have a right to know how their biological samples are being used and have a right to control the use of those biological samples,” he said.

“One of the issues we’re concerned about it the building of a national DNA database and how such a database would be used by government or by private interests to discriminate against people based on genetic pre-dispositions.”

Mr. Eby said the complaint is the first of its kind in British Columbia. In the United States, parents in Texas and Minnesota have filed lawsuits against health authorities, sparking accusations that health authorities were secretly warehousing DNA. In Texas, a judge has ordered a health authority to destroy about five million infants’ blood samples.

Hillary Vallance, the director of the newborn screening program of B.C. and Yukon, conceded that policy guidelines governing the use and storage of the cards need to be updated.

When asked why parents aren’t informed about how their babies blood samples will be used, Dr. Vallance replied:

“That’s a very good question.

“It’s one of these things we honestly didn’t realize that there was public interest in the primary purposes for storing the cards,” Dr. Vallance said, adding: “We are responding to that.”

An advisory committee, made up of scientists, lab professionals and an ethicist, will update the policy and make the information known to parents, likely on the program’s website, she added.

Dr. Vallance said blood spot cards are stored in bulk because a large sample is needed to refine the tests that are run on newborns. And they’re stored indefinitely for quality control purposes. Some disorders, such as hypothyroidism, for example, can be present at birth or acquired later in life, she said. If a 5-year-old child shows symptoms of this kind of disorder, doctors can return to the original blood sample to see if it was missed.

The blood spot cards have been used for two other medical research studies in B.C., Dr. Vallance said, but those studies had to be approved by a University of British Columbia ethics board and samples weren’t identified by name.

The parent who made the privacy complaint did not want to be identified. He also demanded that his children’s blood spot cards be returned to him.

Burnaby parent Rhian Walker said she was shocked to learn her nine-month-old daughter’s blood can be used for other purposes than testing for medical disorders.

“This was never, ever explained anywhere to me,” Ms. Walker said. “I think this would change a lot of parents’ perception of that test. You’re trying to do what’s best for your baby, so I’m a bit taken aback to learn that now that information is being stored and utilized in a way that I haven’t given consent for.”