since the marketplace is still so new and people are still only
beginning to learn how to interpret the results. "When you
get these tests done, you sign a lot of pieces of paper that say
you know what you're walking into," he says. "They even at
one point in your waivers say, in caps, 'You may find out
things you don't want to know.'"
Knome founder George Church of Harvard Medical School
says the U.S. Genetic Information Nondiscrimination Act of
2008 prevents insurance companies from upping their
premiums or dropping consumers who discover bad things
from genetic testing. However, he adds, the act "doesn't stop
consumers from gaming the system." If a patient finds out her
genome gives her a clean bill of health, she might cut back
on insurance coverage reducing the pool of money insurance
companies use to pay for expensive care for sick subscribers.
Or if a patient learns he's at a high risk for something such as
Lou Gehrig's disease, he may preemptively sign up for all the
medical coverage money can buy. Such scenarios ultimately
aren't fair to insurance companies, Church says. He suggests
that the insurance industry now needs to team up with
geneticists to brainstorm ways to work within GINA while
still discouraging abuses of the systemWhile it's common
practice now, DNA evidence wasn't used to convict or
exonerate criminal suspects until 1986, when Richard
Buckland was exonerated despite having confessed to rape
and murder near Leicestershire, England. A year later, the
first person was convicted in America on the basis of DNA
evidence. According to the Innocence Project, more than 250
people in the U.S. have been exonerated through
postconviction DNA testing since 1989.
Victor McElheny, author of the new book Drawing the Map
of Life: Inside the Human Genome Project (Basic Books),
says some cancer patients today are already having parts of
their genome and sometimes a tumor's genome sequenced.
"When you do cancer chemotherapy, you're operating pretty
much by guess and by God," he says. "An awful lot of cancer
drugs only help maybe one-third of the people who get them.
You'd like to know what the person's own genetic
predispositions are, so you can start picking the right drug
the first time."
Cancer treatments are the first in a line of predicted
"personalized medicine" breakthroughs, in which a person's
genetic information helps doctors tailor the treatment to the
patient's specific body chemistry. One big problem, however,
is that well-trained doctors in genetics are still a rare breed
today. And patients, more and more, will need good genetic
advice.
Matthew Bower, a genetic counselor at the University of
Minnesota Medical Center in Minneapolis, says his field is
entering an age of data overload. A's, C's, G's and T's can
crowd out useful medical knowledge and counseling as much
as it can help bring it on. "There are not enough genetics
professionals to be managing everyone's genome out there,"
he says. And without good counseling, he says, people can
still make bad decisions.
