Minnesota Newborn Screening Program Keeps Minors' DNA for Testing, Etc.
A class action comprised of parents of newborns in Minnesota is suing the state, its Department of Health, and its commissioner, claiming that they have violated the state's Genetic Privacy Act, which took effect in 2006. The Act was designed to protect the genetic privacy rights of all people living within the state, including newborns.
The complaint alleges that within 5 days of each of the minor plaintiff's birth, in accordance with the state's 'Newborn Screening' program, the defendants "took blood from each minor plaintiff, which contains the genetic information of the minor plaintiff," as they similarly collect samples of genetic information from all of the babies born in Minnesota.
Then, however, after testing the samples for genetic abnormalities, rather than destroying the samples, the defendants stored them and, "disseminated the genetic information, and conducted tests and research on the genetic information belonging to numerous other persons in Minnesota."
"The Genetic Privacy Act states that genetic information may be used only for the purposes for which an individual has given written and informed consent, may be stored only for the period of time that the individual has given written informed consent, and may not be disseminated without an individual's written informed consent," according to the complaint.
It will be interesting to see whether this case ends up eventually going to trial, or the state enters into some sort of settlement agreement. Of course, the collection of blood from newborns for these screening programs is not reserved to the state of Minnesota, it is merely one of the few states that actually has a protective law in place.
Reality of Genetic Protection Laws
I find this case particularly interesting because I recently read a book, called The Immortal Life of Henrietta Lacks, which is a true story about a woman whose cells were used to create a cell line that was so expansive it was the go to material for any sort of genetic testing, whether for testing the affects of diseases, creating immunizations, or testing medications. Yet, Henrietta had never even given consent for the cells to be used in any sort of research, she was merely seeking treatment for cervical cancer.
In fact, the book details, there really isn't any sort of comprehensive legislative protection in place in terms of cells and DNA testing. Once you give a blood or tissue sample, eventhough you may have received test results and moved on, your samples are stored. While waves of support for protective legislation have occurred, the issue hasn't really entered into the spotlight. In fact, this lawsuit only really has a basis because the state has its own Act in place granting protections.
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