The Associated Press has a story about something I’ve written about before: the unauthorized or unknowing retention and use of newborn babies’ blood samples for purposes other than disease screening. A few months ago, Texas announced that, as part of a lawsuit settlement agreement, it would destroy five million blood samples taken from babies without their parents’ consent and 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.
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.
After those tiny blood spots are tested for a list of devastating diseases, some states are storing them for years. Scientists consider the leftover samples a treasure, both to improve newborn screening and to study bigger questions, like which environmental toxins can harm a fetus’ developing heart or which genes trigger childhood cancers.
But seldom are parents asked to consent to such research — most probably do not know it occurs — raising privacy concerns that are shaking up one of public health’s most successful programs. Texas is poised to throw away blood samples from more than 5 million babies to settle a lawsuit from parents angry at what they call secret DNA warehousing. A judge recently dismissed a similar lawsuit in Minnesota. […]
But as scientists sought to use the leftovers for broader research, suddenly the informing of parents — especially about long-stored spots — became an issue. While blood spots are stripped of identifying information before being handed over to scientists, people generally need to consent to participate in research.
“My kid is not a lab rat. You have to ask before you can use him in an experiment, before you can use his blood, his tissues, his DNA, whatever,” says Andrea Beleno, one of the Texas parents who sued. Among their worries: that genetic information about the children could fall into the wrong hands. […]
To scientists who pore through dusty warehouses in search of blood samples stored by health department ID codes — not the babies’ names — privacy concerns are exaggerated.
“There’s a gap between the name and the DNA. … There’s no way one could just put one’s hands on these blood spots and know anything about that person,” says Dr. Christopher Loffredo of Georgetown University, who needed families’ permission to cull about 1,200 blood spots stored in Maryland for a study that linked a pregnant woman’s smoking or exposure to certain chemical solvents to fetal heart defects.