As
scientists continue to discover new
genes, our genetic makeup becomes
less and less of a mystery....soon,
EVERYONE will be able to know what
genetic diseases they might have
at some time during their lives....this
is an important article which appeared
in the The American Medical News,
American Medical Association, May
5, 1997, Volume 40, Number 17, entitled "Ban
genetic discrimiation?"--Congress
eyes plan to prevent denial of health
insurance....by Geri Aston, AMNEWS
Staff
This
is your opportunity to contact your
political representatives and let
them know your feelings about genetic
testing and the importance in particular
of HH testing and that it can SAVE
the patient's life, not DOOM it (as
many other genetic tests unfortunately
do)....people NEED to be screened
for hereditary hemochromatosis by
DNA testing....but some patients
are afraid to be tested this way
for fear of genetic discrimination....This
fear needs to be abolished so that
patients can get the proper DNA screening
that they need.
Sandra
Thomas, President, American Hemochromatosis
Society
Ban
genetic discrimination? Congress
eyes plan to prevent denial of
health insurance
By Geri Aston, AMNews staff. May 5, 1997.
------------------------------------------------------------------------
WASHINGTON
-- Sharon Ritter's three
aunts died of breast cancer, and
her mother has had preventive surgery
to avoid the disease.
But
when given the chance to be tested
for a genetic predisposition to breast
cancer as part of a National Institutes
of Health research program, the 36-year-old
Virginia resident turned the opportunity
down.
Why?
Her fear that if she tested positive,
a health insurance company might
one day use the results to deny her
or a family member coverage.
Ritter,
a married mother of two, is her family's
source of health insurance. And although
she feels secure in her insurance
benefits as a federal employee, she
knows there's no guarantee she'll
always work for the government.
"It's
a double-edged sword, this information," Ritter
said. "It can help you, but
it can hurt you. I'm not willing
to have my family be uninsured."
Ritter
knows her decision not to get tested
limits her opportunities for preventive
measures.
"I
feel the risk is greater for my family
than for me," she said.
Clash
over genetic discrimination
Fueled
by concerns such as Ritter's and
that insurers do deny or limit coverage
based on genetic information, momentum
is building in Congress to prohibit
the practice.
Meanwhile,
insurance groups fiercely oppose
legislation that would limit their
ability to use genetic information
to assess insurance risk.
"There
is going to be a direct, head-on
clash on this issue," predicted
Linda Emanuel, MD, the AMA's vice
president for ethics standards. "The
dilemmas raised by this bring us
back to the root question of what
is the appropriate form of health
care coverage for our people in this
era of genetic medicine."
Lawmakers
in both the House and Senate have
introduced several bills that would
ban what they call genetic discrimination
by health insurers, and the House
Commerce Committee has appointed
a task force to investigate the issue.
"We
want to make sure the social policy
keeps up with the science," said
Rep. Louise McIntosh Slaughter (D,
N.Y.), who sponsors legislation that
would ban health insurers from using
genetic information to set rates
or deny coverage.
That
science is advancing at an astonishing
rate. The Human Genome Project discovers
new disease genes almost weekly and
may reach its goal of sequencing
all the DNA in the human genome before
the target year of 2005.
Once
a gene tied to a disease is discovered,
it is often only a matter of months
before a diagnostic test for it is
developed, according to the National
Center for Human Genome Research.
Genetic
feats once only possible in the realm
of science fiction have become reality
as scientists this year succeeded
in cloning a sheep and creating the
first artificial human chromosomes.
New
law not strong enough
While
this progress holds out hope for
prevention and perhaps one day even
a cure for genetic ailments, it also
intensifies concerns about the potential
for abuses of people's genetic data,
said lawmakers as well as genetic
researchers and ethicists.
"This
could possibly be the civil rights
issue of the next millennium," said
Rep. Cliff Stearns (R, Fla.), who
leads the Commerce Committee's genetics
task force.
Stearns
said he will hold three hearings
on the ethical, legal and social
questions surrounding genetic advances
with an eye on protecting privacy
rights and preventing discrimination.
He plans to then introduce new legislation
on the issue.
"We've
got to push the edge and get [congressional]
leadership to understand that we
have to put this stuff in place because
it's going to be coming through the
courts," he said.
Although
the Kassebaum-Kennedy health insurance
reform law provides new protections
regarding genetic information, some
lawmakers and experts in the genetics
field believe it does not go far
enough.
The
new law prevents group health plans
from using genetic information to
determine insurance eligibility or
to set preexisting medical condition
coverage exclusions.
But
it doesn't help people whose employers
don't offer insurance coverage, Slaughter
said. In addition, the law's provisions
guaranteeing insurance eligibility
for certain people who move from
the group market to the individual
market doesn't limit premium charges,
she noted. So insurers selling individual
policies could charge unaffordable
rates to people with a genetic predisposition
to an illness, she said.
The
law also doesn't prevent plans from
requiring genetic testing, excluding
all coverage for a particular condition,
or imposing lifetime caps on all
benefits or specific benefits, added
Karen H. Rothenberg, a University
of Maryland law professor who chairs
the National Action Plan on Breast
Cancer working group on hereditary
susceptibility.
"It's
only as good as your insurance is," she
said.
A
flurry of bills aim to close some
of these loopholes.
Slaughter's
proposal and its Senate companion
bill, offered by Olympia Snowe (R,
Maine), would prohibit both group
and individual plans from requiring
applicants to disclose their genetic
information. Legislation by Rep.
Gerald Solomon (R, N.Y.) would do
the same.
The
Slaughter and Snowe measures also
would prevent all plans from denying,
canceling or refusing to renew coverage
and from varying insurance premiums,
terms or conditions based on genetic
data.
"The
only thing I want is to make sure
the American consumer is protected
from losing their health insurance
because of their genetic makeup," Slaughter
said.
Slaughter's
and Snowe's bills would prohibit
Medicare supplemental insurers from
denying beneficiaries coverage or
charging them higher premiums based
on their genetic data. A similar
provision is included in House and
Senate medigap reform bills.
And
Sen. Pete Domenici (R, N.M.), who
championed last year's successful
maternity stay and mental health
parity legislation, recently introduced
a genetic information privacy measure
that includes bans on employer and
health insurance discrimination based
on genetic data.
Privacy
concerns well-founded
The
stakes go beyond simply protecting
people's access to health insurance,
according to legislation proponents.
The lack of safeguards preventing
discrimination could endanger genetic
research by causing people at risk
of genetic diseases to shy away from
studies, they say.
Many
people, like Ritter, who are at risk
for genetic ailments, also may avoid
testing for fear of discrimination,
thus placing their health at risk,
proponents say. That reluctance could
change, however. "If the Slaughter
legislation went through, I'd be
right out there getting tested," said
Ritter.
Recent
studies show that many Americans,
especially those most at risk of
genetic disease, are concerned about
the privacy of genetic data and the
possibility of discrimination. Some
surveys also show that their concerns
may be well-founded. For example:
•According
to a nationwide AMA-sponsored survey
of 1,000 people conducted in February,
75% of Americans would be tested
for one or more specific genes, but
81% would be concerned about the
privacy of that information. In a
study published in the June 26, 1996,
Journal of the American Medical Association,
43% of the 279 people at risk for
a genetic predisposition to breast
cancer who were surveyed requested
their test results. The possibility
of losing health insurance was considered
a risk by 34% of respondents. •Of
the 917 members of genetic disease
support groups surveyed in a study
by researchers from Harvard, Stanford
and the University of Massachusetts
published last year in Science and
Engineering Ethics, 455 reported
that they believed they were subject
to genetic discrimination by such
organizations as health or life insurers,
their employers, health care providers,
the military or schools.
Researchers
believe the studies, though based
on people's perceptions, point to
real abuses by insurers.
"[Respondents]
told us many stories about their
experiences that are convincing to
me," said E. Virginia Lapham,
PhD, one of the Georgetown study's
researchers and principal investigator
at the university's Human Genome
Education Model Project.
Insurers
oppose new legislation
But
insurance groups doubt the validity
of the research and oppose legislation
preventing them from using genetic
information in the individual insurance
market.
"These
are surveys and not studies," said
Richard Coorsh, spokesman for the
Health Insurance Assn. of America. "People
are asked about their perceptions.
People perceive one thing, and reality
may be something else altogether."
Both
the HIAA and the Council for Affordable
Health Insurance say genetic discrimination
by health insurers is not widespread.
The
two groups argue that in the individual
market, health insurers should be
able to use genetic data like other
medical information to determine
their risk and set prices accordingly.
Many
insurers already use predictive information,
such as weight or cigarette smoking
habits, to determine rates, said
David Lack, the insurance council's
president. "Why should genetic
information be any different?"
The
legislation could lead to situations
in which people would test positive
for genetic predispositions to diseases
and then run out to buy health insurance
without any obligation to tell insurers
of the risk they would assume by
covering them, he said.
If
insurers aren't able to use all medical
information available to determine
risk and set prices, they could incur
losses when those individuals get
sick, according to Coorsh. This would
fuel insurance rate increases, he
said.
Because
the individual market is so price-sensitive,
the resulting premium increases would
cause many people to drop their insurance,
Coorsh said. This would lead to a "death
spiral" of rising rates and
shrinking enrollment, he said.
Charges
of cherry-picking
Legislation
supporters have little sympathy for
insurers' arguments.
"If
they know all the information, they
can cherry-pick," Stearns said.
"Insurance
is a gamble, and they need to take
one, too," Slaughter added.
Preventing
insurers from using genetic information
to determine prices or eligibility
would not increase their insurance
risk beyond what it is currently,
several researchers said.
"These
are the people you're covering now," said
Claudine Isaacs, MD, assistant professor
of medicine and medical director
of a genetic testing program at Georgetown's
Lombardi Cancer Center. "We
all have preexisting conditions based
on our genetic information."
Since
virtually everyone has gene mutations
that predispose them to certain illnesses, "if
insurers started discriminating against
us because of it, they wouldn't have
a market," Rothenberg said.
In
light of the controversy over genetic
information, many researchers said
physicians need not only to become
more knowledgeable about the evolving
science, but also about the discrimination
risks so they can adequately counsel
patients who are considering testing.
Toward
that end, the AMA and the American
Nurses Assn. are co-chairing the
National Coalition for Health Professional
Education in Genetics.
"It's
something people realize needs to
be a thrust," Dr. Isaacs said.
Banning
genetic discrimination
The
Human Genome Project's Working Group
on Ethical, Legal and Social Implications,
in partnership with the National
Action Plan on Breast Cancer, have
developed recommendations to ban
genetic discrimination in health
insurance and employment.
They
suggest that health insurers be: