A shocking new report in the Texas Tribune reveals that state health officials illegally turned over 800 infant blood samples to a federal DNA database to be used not for medical research but forensic crime fighting.
The samples were donated without parental consent, according to the report, and were intended to be used for medical research into birth defects, childhood cancer and environmental toxins.
The reality: The samples were used "to help build a vast DNA database — a forensics tool designed to identify missing persons and crack cold cases," according to the report.
The state of Texas has for decades screened newborns for a variety of birth defects, pricking their heels and collecting drops of blood on a paper card. Until 2002, cards were thrown out after a brief period of time -- but afterward, the state health department began storing them indefinitely for "research into causes of selected diseases."
It collected some 800,000 per year.
The Texas Tribune says it reviewed nine years' worth of e-mails and internal documents on the Department of State Health Services’ newborn blood screening program to discover the truth.
The report shows how an international mitochondrial DNA (mtDNA) registry could help us solve health problems on a macro level never before seen in human history.
But it could also reveals what could go wrong when that data is used incorrectly.
The paper says its research shows "an effort to limit the public's knowledge of aspects of the newborn blood program, and to manage the debate around it."
The DSHS itself admitted that it participated in the project because officials believed it would help in missing-persons cases, despite the knowledge that the blood spots could not be linked back to a particular individual.
The rub: The DSHS defends its deception because it says its intent was for greater good, and its research proposals indicate that the data was hoped to be shared worldwide for international law enforcement, including anti-terrorism and homeland security uses.
All from a few pricks of blood.
The big reveal puts a big ethical black eye on the idea of a federal, universal database of any biological data. To be sure, such genetic databases can help us understand the problems reported in doctor's offices around the nation.
But can we trust officials to follow instructions? What place does law have in all of this? To what extent does strict privacy hinder our ability to detect patterns?
This post was originally published on Smartplanet.com