| This is the kind of situation privacy experts worry about.
Janet, a 35-year-old college professor, has been diagnosed with faulty genes that can lead to lung and
liver disease. No one has denied Janet a job or cut off her insurance. But she is afraid they might.
So Janet, who has never developed symptoms and has a job with health benefits, still pays nearly $300
a month for private insurance. "My concern is getting coverage in the future," says Janet, who asked that her last name not
be used.
"If I reapply for health insurance, I would imagine this is a pre-existing condition. I don't know.
I don't want to bring it to their attention."
And it's just that fear that civil and patients' rights advocates want to address. As the genetic revolution
progresses by leaps and bounds, the advocates say it's time for a national law to keep DNA data private and outlaw its use
by employers and insurance firms in most cases. Although there is bipartisan support in Congress for the idea, antidiscrimination
bills have stalled over other issues, such as whether patients should have the right to sue if their information is abused.
Part of the problem is that at this point, genetic discrimination is more of a fear than a reality.
"It's the kind of thing that has not yet given rise to a lot of named complainants," says Ron Weich, a Washington, D.C., lawyer
working with the American Civil Liberties Union on the issue. "It's an emerging science, and discrimination is something we
fear. We need to nip the problem in the bud."
Many scientists involved in genetics research echo that concern. Francis Collins, head of the National
Institutes of Health's human-gene-mapping effort in Bethesda, Md., last summer called on legislators to act "before we find
ourselves in a needless crisis situation."
But new cases could help galvanize Congress and the public. This month the Equal Employment Opportunity
Commission filed a lawsuit against Burlington Northern Santa Fe Corp. of Fort Worth, Texas, saying the railway company had
violated the Americans with Disabilities Act by testing some of its employees for a genetic flaw linked to carpal-tunnel syndrome.
The company's aim: to deflate employees' claims that their repetitive-stress injuries were job-related. Burlington says it
has now dropped the practice, but the EEOC says it is pursuing several other employment-related genetic-discrimination cases.
Genetic Crystal Ball
The greatest concerns surround tests that can, in effect, predict the future. For instance, those who
test positive for the DNA mutation for Huntington's disease are 100% likely to develop the neurological condition
later in life.
Since it's currently not clear how insurers or employers would react to this information, many people
try to keep it secret. At the genetics clinic at the University of California, Los Angeles, nearly 80% of people tested for
the Huntington's disease gene choose to pay the $330 test fee of out of pocket, rather than alert their insurance
companies, according to UCLA genetic counselor Michelle Fox.
"The patients fear there is some tracking mechanism, that somehow this information will be disclosed
to an employer and if they switch jobs it will be part of their medical record," says Ms. Fox. At UCLA, patients can choose
to be tested anonymously or to keep the results out of their medical record.
Under privacy rules issued by the Clinton administration in December, health-care providers wouldn't
be able to disclose such records to employers or insurers. However, those regulations have been questioned by the Bush administration
and could be scaled back before they go into effect two years from now.
That means genetic-rights advocates will continue to push for a federal bill in Congress. The legislative
proposal many favor is the Genetic Nondiscrimination in Health Insurance and Employment Act, introduced in the Senate last
July by Democratic leader Tom Daschle of South Dakota and Massachusetts Sen. Edward Kennedy. |
The act, which will be reintroduced this session, guarantees widened
protection over DNA data and also gives patients the right to sue if their information is released or used against them.
Although that bill doesn't address life insurance, trade groups for that industry have been most aggressive
in running interference against similar bills at the state level. According to Roberta Meyer, senior counsel for the American
Council of Life Insurers, a group based in Washington, D.C., of the 37 state genetic-privacy and antidiscrimination bills
that have been enacted, only two -- in Vermont and Massachusetts -- restrict life insurers' ability to perform risk-based
underwriting.
The industry's rate-setting practices have long reflected a given individual's risk of an untimely death.
And although genetic tests aren't widely used yet, the industry argues that the information they provide isn't much different
from that provided by other widely used screening procedures, like testing for HIV. "To the extent that the tests become widely
used and widely accepted, and that they have actuarial meaning, then we would like to use them," says Ms. Meyer. "We don't
want to be legislatively frozen in time."
The health-insurance industry has found it has a lesser stake in the issue. That is because 95% of its
clientele belongs to group health plans, which are already forbidden by law to use any health information in setting rates.
In fact, because patients stay with a plan for only three years on average, insurers also lack an economic incentive to use
costly genetic screens. The exception is in the shrinking individual-coverage market, where most states allow health insurers
to use medical-risk assessments to set rates for individuals, exclude pre-existing conditions from reimbursements and sometimes
deny coverage. The industry wants to retain its ability to use genetic testing in the individual market.
Lightning Rod
Mark Hall, a law professor at Wake Forest University who has studied the state laws enacted so far,
says their effects have been largely "symbolic and psychological." He says they have been effective in discouraging insurers
from introducing genetic tests, but have also had some unintended consequences. Mr. Hall says they are written in ways that
could undermine some legitimate uses of genetics, and also appear to have actually increased people's fear of discrimination.
His prescription: more legislation. "My study found that people perceive the legal protections as inadequate, in a way that
a strong federal law would address," Mr. Hall says.
Meanwhile, regulation aimed at insurers and employers misses the most aggressive user of DNA information
-- the government. Genetic profiling by states and federal agencies dwarfs anything done in the private sector. In the U.S.,
infants are tested for as many as 20 genetic disorders just days after birth. These are mostly for treatable metabolic conditions,
and physicians say thousands of lives are saved each year thanks to the tests, which are mandatory.
The Department of Defense collects blood from every soldier for DNA identification of bodily remains.
And all 50 states now perform DNA typing on every new convict, in order to help solve crimes. Some in law enforcement would
like to follow the U.K.'s lead and collect blood from all who are arrested.
George Annas, a biomedical ethicist at Boston University, says these growing banks of millions of blood
samples -- many stored indefinitely -- present the most potential for abuse. Most people don't realize that every time they
give blood, they also give away all their genetic information.
"Once I have your DNA, I don't need you anymore," says Mr. Annas. "I can do a DNA test when a new test
comes. DNA becomes more valuable every day, and who controls the DNA molecule is very important."
-- Mr. Regalado is a staff reporter in The Wall Street Journal's New York bureau. |
