Genome sequencing could reveal information such as high risk of Alzheimer's and other diseases that are irreversible by today's medicine. And since many doctors may not be able to provide preventive strategies for these diseases, the person tested may decide after the fact that he or she would rather not have known.
"The issue of protecting the right not to know is an important one," said Dr. Francis Collins, director of the National Institutes of Health. "Nobody should be forced to find out genetic information about themselves if they don't want it."
While not all children are the same, perhaps waiting to tell some children might save them from anxiety, Collins said.
"You can make a case for not revealing all of the information right away, giving that person a chance to decide when they're 18 or 21 years old, do they really want to know about their Alzheimer's disease risk or the late onset cancer risk," Collins said.
Knowledge of personal disease risk also raises the question of whether life insurance companies, health insurance companies or potential employers might be able to access the information.
The 2008 Genetic Information Nondiscrimination Act (GINA) enacted by Congress prevents group health plans from denying coverage to a healthy individual or raising a person's premiums based solely on a genetic predisposition to developing a disease. However, Collins said, GINA does not prevent discrimination for long-term care insurance, disability or life insurance, which may need to be considered should genome sequencing expand.
Still, the prospect of whole genome sequencing has further opened the doors to discovering new genetic codes and their link to disease.
Collins said he expects the price of whole genome sequencing to drop to under $1,000, and the test may become a more widely accepted option.
"It will become eventually and probably in the next five or six years, cheaper just to synchronize the entire genome and get all the information at once, and I think that's where newborn screening will go," he said.
In the meantime, one of the best ways to understand personal risk and prevent disease is to know your family history, Collins said.
While the West family said there is much they do not know about their genome sequence, what they have found has helped them better understand their risk for a particular disease and work to prevent its onset.
"I'm of the opinion that if there's anything in my genome that would make me more prone to a disease, if I find out now, I can possibly go into that field and try to research a cure for that," said Paul West.