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By Todd
A. Smith*
In the 1997
science-fiction movie Gattaca, the near future is portrayed
as a world where biology truly is destiny. Genetic engineering
has been perfected and is routine. Scientists can predict—and
the government knows—what health problems you have, what
diseases you'll get, and even when you'll die, and from what.
What job
you can get, even who you can date or marry is all determined
by your genetic code at birth. Vincent, played by Ethan Hawke,
is the hero who overcomes an "inferior" genetic code
to succeed.
The movie
is futuristic science fiction, but advancements in genetics
are in the here and now. And with those advancements come new
challenges for our society about how to balance technology and
personal privacy.
The human
genome project has identified and sequenced the entire genetic
code of human beings—one of the most significant scientific
accomplishments in history.
Scientists
and doctors can now identify genetic markers for a wide range
of health care problems, to better predict, prevent and treat
a whole host of diseases ranging from diabetes to cancer to
cystic fibrosis. There are over 15,500 recognized genetic disorders
which affect 13 million Americans.
Unfortunately,
the ability to predict disease through genetic testing and family
history opens the door for discrimination, particularly in employment
and health insurance.
And according
to the National Human Genome Research Institute, each of us
probably has a half dozen or more genetic mutations that place
us at more risk for diseases. These genetic quirks don't mean
we'll get a particular disease, just that we're more likely
to. Researchers warn that, because of this, virtually all people
are potential victims of genetic discrimination in health insurance.
Genetic
testing can help individuals and their physicians learn more
about their health—but you shouldn't have to worry that
your personal genetic code, showing, for instance, a propensity
for heart disease, could someday be used to deny you health
insurance or even a job.
One bill
making progress in Congress would address this issue. The Genetic
Information Non-Discrimination Act is a bipartisan bill that
has already passed the U.S. Senate by an unanimous vote.
It would
prohibit health insurance companies from using genetic information—including
information about genetic services—to deny insurance coverage
or to adjust premium rates. And it would bar public and private
sector employers from making employment-related decisions based
on the genetic information of applicants and employees.
"The
American people have a right to expect that when they make the
decision to undergo genetic testing, their private genetic information
will be protected from abuse," said U.S. Rep. Louise Slaughter
from New York, the author of the legislation.
"As
technology rapidly changes, so must federal law," added
Rep. Judy Biggert from Illinois.
Privacy
has become a serious issue in recent years. Congress has acted
to protect the privacy of individuals' medical records - though
some states are now challenging that. Online identity theft
represents a new threat to Americans we never considered a decade
ago. And new laws passed by the federal government make it easier
than ever for your library records and other personal information
to be snooped on.
One poll
conducted by Time/CNN indicated a full 75% of Americans would
want to be able to keep their genetic information private from
their insurance company. And according to the National Center
for Genome Resources, 85% of those polled think their employers
should not have access to that information.
Developments
and discoveries in genetic research—and we will no doubt
see many more advancements in the years to come - mean disease
can be predicted earlier, treated better, and cured more often.
But as with
any technology, it is not without risk. A balanced approach
is necessary to ensure we protect every individual's right to
privacy and to be free from discrimination.
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