TwinCities.com reports on a case concerning the storage of newborn babies’ blood in Minnesota. I’ve written before about the unauthorized or unknowing retention and use of babies’ blood samples for purposes other than disease screening. The Washington Post has written about the ethics and privacy issues when children’s medical data is collected and retained without parents’ knowledge or consent. In mid-2010, Texas announced that, as part of a lawsuit settlement agreement, it would destroy five million blood samples taken from babies and used for research without their parents’ consent. The blood was originally gathered to screen for birth defects. Privacy issues connected to newborns’ blood samples have been raised internationally, as well. In New Zealand, the Privacy Commissioner warned against expanding the use of such genetic data beyond disease testing, noting DNA is the “ultimate marker of identity.” A Tel Aviv University researcher’s article in Science said we don’t know the future privacy or civil liberty implications of distributing children’s genetic data.
Adding to a national debate that pits privacy concerns against medical researchers, the Minnesota Supreme Court ruled Wednesday that a lower court must reconsider a challenge to the state Health Department’s practice of storing blood samples from newborns indefinitely.
Attorneys for plaintiffs in the case said the ruling means the Health Department might be forced to destroy nearly 1 million blood samples that researchers have drawn on for limited medical research purposes since 1997. […]
At issue are blood samples collected from babies as part of the Health Department’s newborn screening program. The samples are tested for disorders, but the Health Department retains for other purposes the excess blood samples and test results. […]
The screening program requires blood samples to be taken from children by the fifth day after birth. The sample consists of a few blood drops collected on a specimen card. The card is sent to the Health Department, and the sample is tested for disorders. The screening typically uses about 70 percent of the sample, but the Health Department keeps the remainder indefinitely unless there is a specific request to have it destroyed. […]
Two years ago, nine families sued the state in Hennepin County over the retention and use of the blood samples. The plaintiffs don’t have a problem with the newborn screening program, [said Scott Kelly, a lawyer for the plaintiffs], but they have privacy concerns about the retention of the samples. […]
The Minnesota Supreme Court ruling rejected the state’s argument that it could retain the samples under an exception to the state’s Genetic Privacy Act. Previously, Hennepin County District Court dismissed the families’ lawsuit and the Court of Appeals affirmed that decision.
The case now goes back to the district court for consideration of what remedies might be available to the plaintiffs. While a majority of justices ruled to send the case back to the lower court, three judges said they agreed with parts of the ruling and dissented with other parts.