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South carolina storing baby dna { June 25 2002 }

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Genetic Dossier
written by Peter Barnes, Tech Live Washington, DC bureau chief on Tuesday, June 25, 2002

Does Big Brother have your baby's DNA?
South Carolina has defused a recent controversy over its practice of freezing and storing infants' blood samples in perpetuity, samples that critics feared could be used someday for DNA testing without the subjects' permission or anonymity. Tonight's "Tech Live" reports.

Since 1995, the South Carolina Bureau of Laboratories at the state's Department of Health and Environmental Control (DHEC) has collected about 300,000 blood samples from newborns. The samples are used to test almost every baby in the state for six potentially debilitating diseases, including sickle cell anemia.
All states require some form of newborn testing.

Policies vary from state to state

Until recently, South Carolina's tested samples were sealed in plastic bags with barcodes on them and stored in two huge freezers in the basement of the lab. No policy for their later destruction existed. While the storage policy was created and approved by state lawmakers in 1994, most parents had been unaware of the DHEC's practices.

Officials said the intent of keeping the samples indefinitely was to assure they were available for future testing in the event that medical researchers someday developed new tests for other diseases.

Jennifer Burpee, senior manager of environmental health at the Association of Public Health Laboratories (APHL), said policies on retaining infant blood specimens vary from state to state. Some states retain samples indefinitely, as South Carolina once did. She did not have a list of those states and referred questions on the issue to officials at the Centers for Disease Control in Atlanta, who did not return calls for comment. A spokesperson for the National Conference of State Legislatures had no information on storage and privacy policies for states.

Burpee said the APHL is in the process of drafting a position paper calling for a national consensus on sample retention policies. She said the organization hopes to release the paper by year's end, and that other organizations, including the American Academy of Pediatrics, are studying the issue as well.

Privacy matters

When a story about the policy appeared in a South Carolina newspaper earlier this year, privacy advocates and state lawmakers jumped to change the rules because of recent advances in genetic testing.

In April, lawmakers approved legislation putting new safeguards on the storage of the blood samples, including giving parents the right to request they be returned or destroyed after a two-year mandatory holding period.

"I know enough about DNA to know that the future is very uncertain as to what it can be used for," said State Senator John Hawkins (R-Spartanburg), who authored the legislation and who has a 4-year-old daughter. "Right now it is limited. But who knows what in the future it can be used for. So I think parents should have the right to say whether their children's samples should be kept or destroyed."

Hawkins said he wanted to make sure samples don't automatically end up as part of law enforcement or government DNA databases, or are used by health insurance companies for screening policy applicants -- or even for human cloning.

"The thing about DNA (is) we don't know what we don't know, we don't know where it is going," he said. "So the prudent thing to do is to go ahead and set down some rules for privacy now, before it's too late."

South Carolina residents are especially sensitive to privacy issues lately. Four years ago, state officials came under fire for selling information from 3.5 million drivers licenses to a New Hampshire company without drivers' consent or notification.

"Our state government has done an abysmal job of protecting its citizens' privacy," Hawkins said.

DNA on ice

Dr. Harold Dowda, chief of the state's Bureau of Laboratories at DHEC, said the lab was simply obeying the law in keeping the samples on ice indefinitely, at minus 20 degrees Centigrade. "This was not a decision taken by the medical advisory committee here at DHEC, the DHEC board or this agency," he said.

On a recent tour of a freezer in his building, he pulled out of box of frozen blood samples. "The only identification on them is a bar code," he said.

The lab protects the identities of newborns in a secure database requiring two passwords, he said. "There is nothing on any specimen that it has ever been used for anything here that would identify a person outside of this laboratory, their physician, and their family," he said. He added that the lab does not do any DNA testing.

Of the 55,000 infant blood samples the lab tests each year, about 200 test positive for a disease.

Stoking the flames

The controversy over the storage of the samples was fueled by disclosures that some anonymous specimens were released for two genetic studies without parent's permission.

A private genetics center in South Carolina received samples to study a genetic disease. "The request for those specimens went through a review board here at DHEC and we were told to release a small number of those specimens -- less than 500," Dowda said.

The second request for samples came from researchers at the South Carolina Law Enforcement Division, which wanted to study DNA profiles. "These were provided to them, never used, and destroyed -- approximately 500," Dowda said.

The only information provided in the studies, Dowda added, were the sex and race of the baby and, in the proposed law enforcement study, the area of the state the sample came from. "Absolutely nothing that could identify an individual," he said.

The rules change

Under new rules, samples that remain in storage can continue to be used for confidential, anonymous scientific studies, unless parents request their child's specimen be excluded from studies.

The rules also say that if a parent does not request a sample be returned or destroyed after two years, a child can make the request when he or she turns 18 years old.

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