While collecting blood samples from newborns is a standard routine in hospitals, most parents would likely be worried to discover that the hospitals were retaining these DNA samples for purposes other than genetic screening.
A blood sample from a small prick on the foot of a newborn allows the hospital to test for health problems and diseases before the baby is discharged. Privacy concerns arise, however, when the genetic material of an infant available in these blood samples is being used for other purposes, such as medical research, without the consent of parents.
In British Columbia, the Civil Liberties Association is currently supporting a class action lawsuit against the province for storing up to 800,000 DNA records without consent. Complaints were received from Vancouver parents who were concerned that this act was a breach of privacy as they were not informed of how these samples would be used for anything except genetic screening of their child. These records, known as blood spot cards, include the infant’s name and date of birth, and are stored at a private facility operated by Iron Mountain and occasionally made available to medical researchers. Eleven years of samples collected from infants in B.C. and the Yukon are currently on file, and there is no policy concerning how long these records will be stored or if they will ever be destroyed.
David Eby, executive director of the BCCLA, explains that the main point of concern is not the fact that these tests are being conducted, but rather it’s “what happens after the test.” Parents are not told that the samples will be used for anything other than health-related screening, but once in storage, the records can become available to law enforcement and government, as well as researchers.
“[Parents] had no idea that these things were going to happen. In fact, they were told the opposite on the information they received about the test from the hospital.”
Some argue that there are positive benefits to conducting scientific research on DNA samples on a blind basis. However, serious questions remain concerning the legality of taking private information and using it without consent, especially outside of research.
A new law supporting the dissemination of such information has the potential to aggravate the debate further. The new provisions to Bill 11 from the recent 2010 B.C. Legislative Assembly will allow the Minister of Health to access personal information, such as DNA records, and share it across provincial government departments, including law enforcement agencies, without notice or consent from affected individuals. Privacy advocates are certainly wary of the dangers of these new provisions, and the BCCLA states that the current records, stored in addition to those that will emerge with the new law, could create the largest DNA database in Canada.
Mitochondrial DNA (mtDNA) registries, or DNA databases, are often employed as “forensics tools,” designed to identify criminal suspects or missing persons and crack cold cases. Though extremely useful, mtDNA registries are only as valuable as their sample size.
Vancouver parents were not the first to take action against such cases, and similar battles are currently taking place both in Minnesota and Ireland.
In Texas, state officials were sued last year for storing and using infant blood samples without parental consent. The Texas Department of State Health Services reported that these DNA records were used for a variety of medical projects investigating birth defects, childhood cancer, and environmental toxin exposure. The department was also revealed to have transferred hundreds of these blood spot cards to an Armed Forces lab to help build a DNA database, as another research project. Whether it was intentional or not, the developments of the latter project were certainly underreported. Following the conclusion of the lawsuit in December 2009, the department agreed to destroy the more than five million infant blood spot records being kept in storage.
The BCCLA has advised concerned parents to wait for a resolution to the class action, or to request that their childrens’ records be returned to them. As of July 2010, there are no current significant developments on the BCCLA lawsuit in Vancouver although Eby states that the litigation is underway.
