Government is Collecting Our Blood for DNA Database
By David J. Stewart
It was recently reported that the State of Texas had secretly collected the blood of 5,000,000 babies. The State of Michigan has collected blood from 3,500,000, as you will read in the following article. Health Council Warns Of Government Plan To Claim Ownership Of Every Newborn's DNA. The American people won't care until it's too late.
Is your baby’s blood in a DNA database?Since I have hippie parents and was born at home with my father acting as midwife, I don’t have to worry about infantile invasions of privacy. But if you had your baby the “normal way” in a hospital, you might have reason for concern.
Many hospitals take blood samples from babies when they’re born in order to screen for genetic disorders (Yay! Science is cool!). In some states, the hospitals keep those blood spots on file for years or even indefinitely, and hand them over to researchers for their use (Wah! Not cool, say privacy advocates.).
The lawyers at Proskauer Rose recently posted an article on this topic on the firm’s excellent privacy law blog.
Parents in Minnesota and Texas recently discovered that these states have been storing their babies’ blood spots and making those samples available to scientists for medical research without obtaining the their permission. The parents are challenging this practice, bringing attention to the issue at a time when there is increasing interest in using the collected blood spots to study diseases. The National Institutes of Health, for example, is funding a $13.5 million, five-year project aimed at creating a “virtual repository” of blood samples from around the country.
Awesome. I thought they only had those in vampire movies!
There are several things not awesome about this in the eyes of parents though. Often, they did not consent to their baby’s blood being put on file, and these samples — and all the genetic information contained therein — could be traced back to their children.
Right now, each state has its own rules determining what becomes of the blood spots after they are tested. For example, Washington D.C. discards them after a year, while Virginia saves them for up to ten years, but does not allow the samples to be used for research. Maryland began storing blood spots in 2004, and is considering making its 350,000 samples available to researchers. At least nine other states store the blood spots indefinitely.
State officials say that research projects requesting use of the blood spots are only approved after undergoing scientific and ethical review, and all identifying information is removed from the samples given to researchers. However, states can still link each sample back to an individual child, which worries some parents, especially with the advances in genetic and electronic data banks linking medical information from a variety of sources. Discovery of new genetic markers means that having someone’s DNA can lead to inferences being made about that person’s future health, behavior, and possibly family relationships. Another fear is that the blood spots, if left in state governments’ hands, will be shared with national and international government agencies, thereby vastly expanding the potential for access to an individual’s DNA.
This is not a little tiny thing affecting just a few people in fancy hospitals. According to the Washington Post, Minnesota has 800,000 blood spots on file; Texas has over 4 million; and Michigan has over 3.5 million, just to name a few states.
Stockpiling millions of blood samples without consent is a highly questionable practice. Dr. Dudes, can’t you just test the blood for genetic disorders and then, if consent hasn’t been given for archiving it, throw it out?
Texas to Destroy Baby Blood Taken Without Consent
AUSTIN, Texas — Texas health authorities will destroy as many as four million blood samples taken from babies without parental consent and stored indefinitely for scientific research.
The Texas Department of State Health Services announced Tuesday it would destroy the samples after settling a federal lawsuit filed by the Texas Civil Rights Project. The project, acting on behalf of five plaintiffs, had sued the Texas Department of State Health Services and Texas A&M University.
The lawsuit alleged that the state's failure to ask parents for permission to store and possibly use the blood — originally collected to screen for birth defects — violated constitutional protections against unlawful search and seizure. Under the settlement overseen by a San Antonio federal court, the blood samples collected without parental consent must be destroyed by early next year. It also requires the department to publish a list of all research projects that used the blood specimens.
The plaintiffs, citing fears their children's private health data could be misused, said there are at least four million newborn blood samples being stored at Texas A&M. Calls placed to Texas A&M were not immediately returned. Health officials could not immediately provide a figure for the total number of samples in its possession.
Andrea Beleno, 33, was one of the parents who sued the state. She said she was "stunned" to learn that blood samples taken from her son, born in Austin in November 2008, were being stored indefinitely for unspecified research projects.
"You have to give permission for them to give your kid formula in the hospital," Beleno said. "I don't understand why you don't have to give permission for the state to keep your kid's DNA."
Texas has been collecting blood samples for decades to screen for at least 27 different birth defects and other disorders. By law the blood could be taken without consent by hospitals, birthing centers and midwives.
The Department of State Health Services established a policy in 2002 in which it began setting aside the blood "spots" after the screenings are done and allowing some of it to be used for research. Before that, the blood was discarded after a certain interval.
This year the Texas Legislature tightened up the procedures, providing opt-out policies for parents, extending privacy guarantees and implementing controls over any scientific research that uses the samples. At issue in the lawsuit settlement are the millions of samples collected and stored before the law took effect in May.
"As a result of this settlement, DSHS will destroy all bloodspot cards received by the department before May 27, 2009," the health services agency said in a written statement. "We will continue to be very sensitive to the privacy concerns of parents and the confidentiality of all medical information."
Under current law, the department can still use the blood samples for quality control and disease research as long as parents don't object. The department screens about 800,000 newborn blood specimens each year.