Parents and Children Deserve Genetic Privacy

by jeeg 28. April 2014 21:23

 

Newborn screening is practiced nationwide to detect rare conditions that may be life-threatening or require medical attention. Shortly after birth, the baby’s heel is pricked and a few drops of blood are placed on a special filter-paper blood spot card, which is sent to the state government laboratory for screening. According to a 2009 study published in the journal Public Health Genomics, nearly every child born in the United States is screened. However, not all parents know the screening took place. Birth is a stressful time. Some parents tell researchers they can’t remember it happened. Others say they were in a “fog.”

Although most parents support newborn screening, parents in Minnesota and Texas have successfully sued after discovering the states stored and used babies’ blood spots after screenings without parental consent. DNA from blood samples has been used for genetic research. In Texas, the Department of State Health Services provided anonymous newborn blood specimens to the U.S. Armed Forces DNA Identification Laboratory for the creation of a forensics database. In 19 states, blood samples taken from newborns are stored from 1 to 23 years, and in eight states they are kept indefinitely, according to the 2009 study led by Beth Tarini, an assistant professor of pediatrics with the University of Michigan Health System.

At issue is ownership of newborn DNA. Should a baby’s birth signal the automatic transferal of DNA rights from a newborn to the government with no parental say? The Citizens’ Council for Health Freedom, which discovered this issue in 2003, firmly believes such a transfer is a fundamental violation of privacy rights. While some states allow parents to opt out of government storage and use, this is not parental consent. It’s dissent. It gives government first dibs to the baby’s DNA. Consent requires a form with a signature before the sample can be stored or used for research. Surrounded by the “fog” of a birth, most parents won’t opt out because they don’t even know their child’s DNA has been stored.

The American Civil Liberties Union of Minnesota has testified against legislation that would strip parents of consent rights in storing and using their babies’ blood samples. Calling it a “radical departure from the traditional use” of these samples, the ACLU said the program was originally developed for the benefit of the child, but the legislation changes the program to one “benefitting medical research at the expense of individual rights.”

Parents rightly want to protect their child from the potential for outside DNA analysis and profiling. The 2009 Tarini study found only 28.2 percent of parents were “very or somewhat willing” to consent to research using their child’s blood samples if their permission were not obtained. In fact, without consent, 55.7 percent would be “very unwilling.” Yet, the Newborn Screening Saves Lives Reauthorization Act of 2013, which is now headed toward a floor vote in the U.S. House, having passed the Senate, does not require that states receiving federal newborn screening dollars obtain parental consent before newborn blood samples can be stored by the government and used for research.

Newborn screening has many health benefits. But to maintain the privacy and liberty rights of the children, ownership of infant samples and the DNA they carry must not be transferred from newborns to the state. The rights of parents to protect their child’s most unique, precious property, their genetic code, must be upheld.

Twila Brase, US News and World Report

 

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