Gene Revolution: Big Brother is Watching

ORLANDO, Fla. (Ivanhoe Newswire) -- We are beginning a genetic revolution. Babies are tested and families can learn their health risks. But what are the risks of taking the test? Could your employer ask you to take one? What about your health insurer? Could it be the next form of discrimination? Who is looking at your DNA? Ivanhoe shows you how you can protect yourself.

"It's outrageous, appalling," Jenny Nelson told Ivanhoe.

She is furious and upset about what happened just hours after giving birth to little Caeden.

"I didn't question it," Nelson said. "I didn't have any idea to ask questions or anything. I just kind of do what they told me to do."

It's not the genetic test that upsets her. It's where her baby's blood sample and sample of her other two children ended up.

"All of my children's are banked and I had no idea," Nelson explained.

All states require genetic testing at birth, but after the results come back, where does the blood go?

"A database of genetic test results of newborn citizens is growing in every state around the country," Twila Brase, R.N., a board member of the Citizens' Council on Health Care in St. Paul, Minn., said.

Brase advocates for a parent's right to know about genetic tests.

"Oftentimes what happens is that the hospital simply does it and it doesn't tell the parents that they have any rights to object," Brase said.

She fears the results will create a database, bringing the Sci-fi movie Gattaca to reality, enabling us to weed out the bad genes and focus on a perfect person

"The stored information is actually owned by the health department in every state, so the baby's DNA essentially becomes government property and then it's up to the government to decide what they want to let researchers do with that DNA," Brase said.

"Is it a realistic possibility to end up with a national database of genetic information? Absolutely!" Sue Blevins, founder and president of the Institute for Health Freedom in Washington, D.C., said.

The first new law to protect our genetic information goes into effect in November. The Genetic Information Nondiscrimination Act (GINA) prohibits genetic information from being used against you.

"We have seen cases of employers using genetic testing in an effort to weed out employees," Susannah Baruch, J.D., the law and policy director at Johns Hopkins University's Genetics and Public Policy Center in Washington, D.C., said. "The genetic tests themselves are sort of dubious scientific value and now the law says that we will not be able to ask people to take those tests either."

Proving discrimination is difficult and knowing exactly where the information is going is almost impossible

"Once the genie is out of the bottle, it's really hard to know what's being done with that information," Blevins explained. "It's hard to get it back in the bottle."

What if people knew Franklin D. Roosevelt would get polio? If a test proved Ronald Reagan would suffer from Alzheimer's, would you have voted for him? How will genetic information impact your future?

It's the fear of the unknown that kept Victoria Groves from revealing her family's secret for years.

"Typically physicians don't test for this disorder that's caused by genes and so what happens by the time you are tested, your lungs are very damaged, and it's irreversible," Grove said. "There's no cure."

Grove's own immune system is destroying her lungs.

"Your immune system, I think, takes a hit and you tend to get sick a lot," Grove said.

Her younger sister died from alpha-one deficiency. Another sister is diagnosed with it. Then Grove was privately tested.

"I was positive and I decided not to tell anybody at that time, because I wasn't sure of the ramifications," Grove explained.

She feared her health insurance would be canceled, but she came down with pneumonia and was forced to tell her doctor. Experts say fearing what may happen prevents many people like Grove from getting the medical attention they need. Blevins believes laws need to be tighter. She's fighting for the three C's. First, the right to consent.

"Nothing is done without you -- without your permission," she explained.

Second is confidentiality.

"We need a law that says you get to determine who can see your information," Blevins said.

And third is contract. Each person should have the right to pay for genetic tests through private companies

"If the federal government becomes the payer of everybody's health care and everybody's genetic test, they will have information to that," Blevins said.

But until new rules and regulations are formed, experts say the genetic dilemma is in your hands.

"For someone considering genetic testing, understanding what's the point of the test, how can it help me and are there any drawbacks to knowing this information about my future risk, those are all important questions and those should all be addressed by an individual in thinking about whether to have a genetic test or not," Baruch said.

For Grove, revealing her secret helped her get better medical care. She didn't lose her insurance and she's getting the support she needs

"I think it's made me stronger because I feel like I have tools and I have support," she said.

It's opening her eyes and ours to the benefits and the risks of genetic testing.

A recent Gallup poll revealed that 93 percent of Americans believe doctors should ask for consent to use their genetic information for research.

If you would like more information, please contact:

Susannah Baruch, sbaruch2@jhu.edu