Minnesota doctors say the state's newborn screening program saves lives and money; some privacy advocates say it amounts to involuntary genetic testing.
About 24 hours after a baby is born in Minnesota, a hospital nurse pricks a heel and squeezes five drops of blood.
Three blood spots go straight to a state Department of Health lab in St. Paul. Two spots are sent by courier to the Mayo Clinic in Rochester. Within days, the family will know if the child has one of more than 50 rare hereditary conditions that can now be detected and treated.
For little Ella Madison, it may have made the difference between life and death.
Ella has cystic fibrosis, where mucus clogs the lungs and pancreas. Such kids can die from lung infections or starve because they can't absorb food. Because the disease was diagnosed at Ella's birth, she started daily drugs and nebulizers. A charmer with big blue eyes and a dazzling smile, she now appears to be a healthy, normal 19-month-old.
But the state screening program that likely saved Ella is now at risk as Minnesota becomes the battleground in the first big clash between genetics and privacy in the DNA age.
Why here? A confluence of factors: Minnesota screens newborns for more disorders than most other states. Minnesota also passed a law last year protecting the privacy of all genetic data. And Minnesota happens to be home to a very determined nurse-turned-privacy advocate, Twila Brase.
Brase leads a small but vocal group of privacy advocates who say Minnesota's newborn screening amounts to involuntary genetic testing, with unknown future implications for employment and insurance. Doctors and public health officials counter that it's a small intrusion that can save about 140 babies a year from death or serious disability.
Both sides say they're taking the issue to the Legislature next year.
"We live in an age of predictive medicine," said Mark McCann, manager of the newborn screening program at the Minnesota Department of Health. That throws up challenges for ethicists and legal experts.
Should parents' consent be required before testing? Should the state ask parents' permission to store the blood spots for research? Who should have access? Who would profit?
"Newborn screening is newborn genetic testing," said Brase, president of the Citizens' Council on Health Care. "We do not yet know today how it could be used tomorrow."
Brase said she's not against newborn testing, but thinks parents should choose whether to do it. Doctors and health officials say Brase's individualistic approach imperils a mother lode of medical data they can use to improve the health of thousands and prevent untold suffering from undiagnosed genetic conditions -- without violating privacy.
Brase has the ear of some legislators. Rep. Mary Liz Holberg, R-Lakeville, who calls Brase a David against the Goliath of the medical industry, sketches this scenario:
"Five years from now, when there's a breach in the computer system, and 200,000 of your youngest residents have been compromised, you wouldn't want parents to be totally unaware that the state is storing this data. That's when we're going to be in really big trouble."
Doctors and health officials say they're baffled over how fear of the unknown can threaten a program with such clear benefits for children today.
"People watch too much TV," said Dr. Piero Rinaldo, who oversees the Mayo Clinic's newborn screening program. "It's CSI syndrome."
The tests target a specific number of conditions, Rinaldo said. "If you think I can extract DNA from a little drop of blood and find out everything about you, it's just not true."