Group calls for more privacy protection for newbornsby Tom Scheck, Minnesota Public Radio
A bipartisan group of state lawmakers is calling for greater privacy protections on newborn genetic testing. Nearly every infant in Minnesota receives a battery of tests to check for various health conditions. Critics are concerned that the state health department is collecting and keeping potentially sensitive genetic data.
St. Paul, Minn. — The dispute over newborn genetic information will again force legislators to balance privacy and public health. This time the debate centers on five drops of blood that are collected after a baby is born. State law requires the blood be analyzed so the health department will know if a baby has certain diseases. But the big question is what is done with that blood after the test is done?
The Minnesota Health Department keeps both the data and the blood, and concerned parents and privacy advocates are worried. Republican Rep. Mary Liz Holberg worries those simple blood drops will reveal more about a person as genetic testing improves.
"Who's to say that 30, 40 years from now, you're going to have probably a good share of the residents of the state of Minnesota with their blood samples in a state owned database and then what happens when they want to use it for other purposes?" Holberg asked.
Holberg and others say they're concerned that health insurers or employers may discriminate against people because of a condition identified by a genetic test.
Right now parents can refuse the newborn screening. And state law allows for a parent to require that the blood and the data be destroyed two years after the health department has analyzed it.
But several parents holding a news conference on the issue said hospital staff members didn't know about the opt-out provision. The parents said hospitals couldn't provide them with the proper paperwork either. Others didn't want their children tested at all but felt they had few options.
Rhonda Gaetano of Minneapolis says she didn't know whether she could have the test done in some other way that would give her control of the information. She reluctantly allowed her son to be tested.
"More was being done than I wanted," according to Gaetano. "He was still put into a database. They still got his blood and more could be done with his blood without any protections."
Citing privacy concerns, several state lawmakers want to change the state laws regarding newborn screening. They want children to be tested only if the parents consent, which is also known as opting in.
Lynda Boudreau, assistant commissioner for the Minnesota Health Department, says that's a bad idea. She says the state screens about 68,000 newborns for 51 different congenital or hereditary diseases. Boudreau says about 70 babies are found to have an abnormality every year. She says the tests help prevent future health problems for the child.
"If there's early medical intervention, it can prevent severe disabilities for those children and sometimes death," according to Boudreau.
Boudreau says changing the law to allow parents to opt in to testing will also increase time and paperwork.
Rep. Phyllis Kahn, DFL-Minneapolis, says she's willing to work with privacy advocates to make sure hospital staff tell parents they can opt out, and have their child's data and blood destroyed.
"Opt-out is an appropriate safeguard. And if, as we've heard the testimony today, the opt-out is not being easily assessed, then that should be fixed. But that's much better than changing it to an opt-in procedure," Kahn said.
Kahn says the issue does raise some serious concerns. She says, for example, that the state has strict laws regarding what the health department can do with the data. But there aren't strong protections covering the DNA sample itself.
Others argue that concerns over privacy may unnecessarily overshadow the benefits of medical research and newborn screening.
Jeffrey Kahn, who is not related to Phyllis, is a bioethicist at the University of Minnesota. He says the Minnesota Health Department has been a leader in public health and has not had problems protecting a person's privacy in the past.
"What we have to look at is, what protections are in place? What misuses have happened in the past? And how do we prevent those from ever happening in the future if we've been able to identify misuses from the past?" says Kahn. "To be frank, I don't know of any misuses of genetic information from the past that would make us think that test results from newborn screening will be used in ways that we think are problematic."
Kahn says the debate centers on a key question -- is it more important to protect a person's privacy or ensure that children with potentially deadly diseases are diagnosed?
- Morning Edition, 02/14/2006, 7:20 a.m.