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. The Texas Tribune later revealed that Texas officials also “were turning over hundreds of dried blood samples to the federal government to help build a vast DNA database.”
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.
Now, Minnesota Public Radio discusses the issue of privacy and babies’ blood samples:
On Tuesday, parents, doctors and researchers urged state lawmakers to reject proposed restrictions on Minnesota’s Newborn Screening program — changes that could keep other parents from such lifesaving results.
Amendments in two Senate bills would require the Minnesota Department of Health to promptly destroy the blood samples that are collected from newborns to identify rare medical disorders that aren’t obvious at birth.
Currently, the agency stores the blood samples indefinitely so they can be used for quality control tests or disease research. The new rules would allow parents to give their written permission to store the material up to a maximum of two years. […]
Twila Brase, president of the Citizens’s Council for Health Freedom, […] said the Health Department’s policy of storing the blood samples indefinitely, and making them available to researchers without consent, is deeply troubling. […]
Minnesota is one of 18 states with a policy on storing and using newborn blood samples. But the language may be too broad for some people who are concerned about privacy, said Dr. Michelle Lewis, a researcher at the Johns Hopkins Berman Institute of Bioethics.
“One of the concerns about the lack of transparency on the part of states regarding the retention and use of residual newborn screening blood samples … is that it … could undermine the public’s trust in both newborn screening programs and the research enterprise,” she said.
Lewis and her colleagues recently completed a study looking at how states communicate with the public about what they’re doing with newborn screening material. She said at a minimum, all states should require that parents be fully informed about how babies’ blood samples will be stored and how they might be used.