Julie Sando’s lifeline, her family.
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The
luxury of insurance
Unlike the
universal healthcare systems of Canada or France, most people in the U.S. rely on
their jobs for access to health insurance. Either employers negotiate competitive
deals with the major insurance companies or they actually pay for their workers’
medical services. Employers are increasingly (55-65 percent) opting for the latter
option because of tax benefits. However, their employees risk paying a high price
in terms of privacy. As medical records become incorporated into electronic databases,
employers may increasingly identify “expensive” workers: those suffering from or
predisposed to a serious condition. Moreover, these employers are exempt from state
insurance regulations protecting genetic information.
Individuals can also apply directly to insurance companies. However, most policies
are “rated”: different customers pay different costs according to their health risks
and family histories. So it may be only a matter of time before genetic tests are
used in the screening process.
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No
one is compelled to show to others more of his inner life than he feels is natural
to show.
Albert
Schweitzer, French missionary and theologian
(1875-1965)
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“I
waited four years to have a test. Not a day went by that I didn’t think I saw a sign
of the disease.” |
For
fear of losing their jobs and health insurance, many Americans are choosing not to
learn of their own “secrets” by foregoing genetic testing
“About five years ago,
my mother started acting bizarre: telling secrets and lies. She was only 59 but she
began falling down a lot and her eyebrow would twitch uncontrollably. The day after
I found out she had Huntington’s I went to the library because I knew nothing about
the disease. I remember standing there, my two young boys playing at my feet, as
I went through the medical jargon to find out three things: first, there is no cure—my
mother is going to die; second, her children—my brother, two sisters and myself—have
a 50 percent chance of inheriting the gene causing the disease; and third, our kids
are at risk.”
“I knew that I had to keep this secret—from everyone but my family. I went on the
Internet where I found a kind of underground Huntington’s community—they told me
about the genetic test for the disease but warned me to be careful. After hearing
the stories about people losing their jobs and medical insurance, I decided not to
test.”
Julie Sando is not alone in the U.S. Many people are protecting their genetic secrets
by foregoing intimate knowledge about themselves and their families. Indeed fear
of genetic discrimination is cited as the major reason why about one-third of people
approached by the National Human Genome Research Institute (NHGRI) refuse to participate
in testing, according to Barbara Fuller, senior policy advisor. After geneticists
first identified the gene linked to Huntington’s in 1993, they predicted that they
would eliminate the disease in a generation. Yet only 15 to 25 percent of eligible
people in the U.S. have undergone testing. To grasp the emotional stakes embedded
in these genetic secrets, Julie Sando recounts her experience.
A
hazy view of genetics as a window on the soul
“I
waited four and a half years to have a test. Not one day went by that I didn’t think
I saw a symptom of the disease—I’d see my hand twitch or just stumble over my words.
Every time, I asked ‘is that it?’ I couldn’t stand the mental anguish of not knowing
if my kids had the disease. It was time to face it… There are two ways of testing:
either go through your insurance and put it on record or stay anonymous and pay out
of pocket (about $1,000). We didn’t have the cash so I took the ultimate risk.”
To protect patients like Julie, about 75 percent of the states have passed laws,
mostly in the last five years, to protect the confidentiality of genetic information.
A new set of federal regulations to reinforce medical privacy in general is supposed
to apply in 2003, but the new administration may re-open the debate.
Yet some studies suggest that fear of genetic discrimination overshadows the actual
number of cases documented. A major survey of health insurance regulators, company
representatives, agents and genetic counsellors from seven states was published at
the end of 1999 to compare the impact of genetic privacy legislation. According to
one of the authors, Mark Hall, a professor at Wake Forest University School of Medicine,
“we didn’t find a single well-documented case of discrimination.” On the contrary,
he reported that a person with a serious but asymptomatic genetic condition faces
little or no difficulty in obtaining health insurance. The reason, Hall says, is
that insurance companies assume people will change jobs and therefore policies every
two to five years. So by the time a client actually requires treatment, it is likely
that he or she will have moved on to another insurer.
But as critics point out, though this may be the case for a 35-year-old woman genetically
predisposed to breast cancer, what about a woman at the age of 50? As genetic tests
become more accurate and accessible in the next few years, “I cannot think of a reason
why underwriters would not use them,” says Fuller of the NHGRI. Hence Julie Sando’s
expression, “I took the ultimate risk. ” By notifying her insurer, she may have put
her children at risk of being denied coverage in the future (see box).
“At the first appointment,” recalls Julie, “the geneticist asked all kinds of questions:
‘who will you tell about the test and why?’ But the real kicker was, ‘Do you have
nursing home insurance?’ I was 35 and asked if that wasn’t far-fetched. The response
was a dead, ‘No.’
“At the next appointment, they took my blood. The two months’ wait for the result
were the hardest in my life. On January 22, 1999, I got up early with my husband
and we prayed. The wait at the hospital seemed like forever. The doctor wasn’t smiling
when he led us into a room and there were tissue boxes everywhere. Finally he said,
‘You don’t have the gene and neither do your children. But that doesn’t change anything
for your siblings.’ I felt like a zombie. It took a year to get over survivor’s guilt.
“I’m the only one in the family who has gone for a test. I recently asked my sister
what keeps her from going. She said, ‘I’ve a friend who tested negatively for the
disease but her company found it in her files and they let her go. I have a sick
husband. How would we live if I lost my job and our insurance benefits?’”
While recognizing the threat of discrimination, some experts like Dorothy Wertz of
the Shriver Center (a research organization) wonder whether public fear may be tinged
by confusion over genetics and the notion that “we are the sum of our genes,” which
pervades popular culture. For many people, test results are seen as windows onto
our souls, says Wertz. Not only are we powerless to alter this information, but it
may be used against us. Hence the gut instinct to preserve “genetic privacy” at all
costs.
Yet this notion of “genetic privacy” doesn’t make sense biologically. For example,
many of the state laws offer special protection for genetic testing of a disease
like Huntington’s. Yet an ordinary cholesterol test can reveal a great deal about
family history like predisposition to heart disease.
“The state laws are good faith efforts but may offer a false sense of security,”
says Thomas Murray, president of the Hastings Center for Bioethics. “It is dishonest
to assign genetics special moral status,” he says, because most common and serious
conditions are a complicated mix of genetic and non-genetic factors.
Julie agrees that the solution lies in protecting medical, not just genetic, privacy.
Yet this does not rule out the need for laws to prevent genetic discrimination, according
to patient rights advocates like Joanne Hustead, director of the non-profit National
Partnership of Women and Families. “This is the new frontier of civil rights—which
is about protecting people from discrimination on the basis of immutable and very
personal characteristics, like race and religion. There is also a bit of self-interest
involved,” she says. “Everyone has genetic mutations and the moment that you start
making decisions on the basis of one mutation or another, there is no end to it.
We are all at risk.” |
