Genetic Testing For Newborns Raising Concerns About Privacy & Discrimination

NEW YORK (CBSNewYork) -- Every newborn in the United States undergoes testing for about 30 congenital conditions.

But what if your new baby could be tested for nearly 2,000 conditions, some of which could be life-threatening.

For now, it's only a clinical trial at Boston Brigham and Women's Hospital made possible by the stunning drop in cost for genetic testing which allows much of a baby's DNA to be scanned for disease causing mutagens.

As CBS2's Dr. Max Gomez reports, the testing has raised questions about both privacy and discrimination.

The day after their daughter Cora was born, Lauren Stetson and her husband, Kyle, got an unexpected visit from a genetic counselor offering a free DNA scan for their newborn -- a scan that could reveal disease-causing variations in their daughter's genetic code.

Baby Cora is now one of the first healthy kids in America to have had her genome searched for hidden problems.

Doctors found something; a partial biotinidase deficiency. Cora showed no outward signs of it but had it not been detected, it could have caused a permanent drop in her IQ.

Dr. Robert Green is a medical geneticist at Harvard an co-director of the Baby SEQ Project, which enrolled Cora and is now recruiting hundreds of other families in something that could save a child's life.

But genetic testing carries risks of privacy breaches and genetic discrimination.

"We can't predict what kind of discrimination is going to be occurring by the time your child grows up," Dr. Green said. "We can't predict whether some sort of privacy breaches, and we most importantly can't predict the information is accurate."

Many genetic variations turn out to be harmless, and even if not, most of the conditions Dr. Green's team is looking for still have no treatment or cure.

It may explain why about nine out of ten families approached for testing have declined.

"People are distrustful of information gathering," Dr. Green said. "They're hearing about all these break-ins and hacks."

But Dr. Green believes the fear is temporary. Before long, he says most Americans will feel much like the Stetsons already do.

"I always think that more knowledge is power," Laura said.

Baby Cora is perfectly healthy thanks to a daily vitamin -- which she'll have to take for life --  mixed into some yogurt.

A number of states have laws that prohibit some forms of discrimination based on genetic information, but that doesn't protect against hacking.