A day-old baby boy's heel is pricked for blood during newborn screening. (Scott Applewhite/Associated Press)

The B.C. Civil Liberties Association says as many as 800,000 babies in the province have been the victims of privacy violations that began the day they were born.

"A functional DNA database has been created of all the infants born," Eby told CBC News on Wednesday morning.

The association says blood samples taken from infants at birth in B.C. hospitals are used to test for about 50 genetic disorders. But after those tests are completed, the samples are then kept in storage indefinitely by the hospital system, and some have been used for medical research.

According to a statement released by the Newborn Screening Program of B.C., the samples, which are kept on so-called blood spot cards, dating back to 1999 have been kept in storage by a private contractor with no written policy specifying how long they will be kept.

Some of the samples have since been used by medical researchers to establish "normal values and ranges" in order to confirm the accuracy of genetic testing, according to the program's director, Hilary Vallance, a clinical professor in the department of pathology and laboratory medicine at the University of British Columbia.

The samples are released to researchers only after infants' names and identifying details have been removed and the research has been approved by UBC's clinical research ethics board, the statement said.

The samples can also be useful if a child needs to be retested if he or she develops a disease later in life, said Vallance.

Family raises privacy concerns

But BCCLA executive director David Eby says the practice is a breach of privacy, because the parents are never informed about the researchers' use of the samples or asked for their consent.

One family, which has chosen to remain anonymous, was particularly concerned about the privacy breach, said Eby.

"This family is concerned about the fact that their children's information has been stored in this way, that there's no disclosure of the fact that it's been stored like that, and also the fact that the cards are available to law enforcement, they're available to government," said Eby. "And finally, that the cards are actually tested on by researchers out of UBC, all of which is done without consent of the parents."

The family requested the program return their children's blood spot cards and tell them in which research studies they might have been used.

Eby says the samples should be destroyed if parents have not given permission for them to be stored.

Vallance said no government agencies, department or law enforcement agencies have ever requested access to the samples, but that they could be released without parents' or donors' consent by a court order.

The practice has also become controversial in the United States, where health authorities have stored leftover blood samples for later medical research, often without parents' knowledge or consent, prompting lawsuits in two states.