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BOBBY P. JINDAL
ASSISTANT SECRETARY FOR PLANNING AND EVALUATION
THE SENATE COMMITTEE ON
HEALTH, EDUCATION, LABOR AND PENSIONS
PROTECTING AGAINST GENETIC DISCRIMINATION:
THE LIMITS OF EXISTING LAWS
Wednesday, February 13, 2002
Mr. Chairman, the Administration welcomes your focus on
the important issue of discrimination in health insurance
and employment based on genetic information. In his radio
address on June 23, 2001, the President called for prohibiting
the misuse of genetic information with Federal legislation
that is fair, reasonable, and consistent with existing discrimination
statutes. He noted that genetic discrimination violates
our nation’s belief in equal treatment and individual merit.
The Administration wants to work with you and other Members
of Congress to enact sensible legislation that ensures Americans
are protected from genetic discrimination.
ADVANCES IN GENETIC MEDICINE
One year and one day ago, Human Genome Project scientists
published the working draft DNA sequence of the human genome,
the 3 billion-letter genetic instruction book for a human
being. The hope of this ambitious project is to improve
human health. With the sequence of the human genome in hand,
scientists are moving rapidly to understand how all the
genes work and to develop new diagnostic tests and therapeutics.
Genetic information can be enormously valuable to patients
and providers as it can lead to early detection, intervention,
and prevention of many common diseases.
Today there are over 500 genetic tests available and this
number is increasing rapidly. In some cases, these tests
offer patients the opportunity to learn about their individual
disease risk profile and, in time, we will have a host of
new preventive interventions to help individuals decrease
their disease risks. While most of us have not yet had genetic
testing offered to us in the doctor’s office, we soon will.
How will we respond to this offer? The first and foremost
consideration for each of us should be how genetic testing
information will affect our health and how we, working with
our doctors and other health care providers, will be able
to use this information to make good health care decisions.
Yet, just as we stand on the brink of a wonderful new era
of genetic medicine, patients are fearful of taking advantage
of these new genetic tests that could save lives. They are
worried that information about their risk for future disease
will be used by health insurers or employers to deny them
insurance coverage or a job.
BARRIERS TO EFFECTIVE CARE
At the National Institutes of Health, study volunteers
are hesitant to participate in critical biomedical research
because they are concerned that their genetic information
will not be kept confidential and will be used by health
insurers or employers to discriminate against them. Individuals
in a preliminary NIH colon cancer study were provided education
and counseling before being offered the genetic test. In
response to being asked what factors might lead them to
take the test, the overwhelming majority stated that they
wished to learn about their children’s health risks and
to gain information to help them plan their own cancer screening.
When asked what factors might lead them not to take the
test, the primary concern cited by 39% was losing insurance.
In a similar study involving genetic testing for increased
risk of breast and ovarian cancer, fully one third of the
individuals who chose not to participate did so because
of their concern about genetic discrimination. As the applications
of genetics move out of the research lab and into broad
clinical practice, this problem will only become more acute.
Thus, genetic discrimination, and the fear of potential
discrimination, threatens both society's ability to use
new genetic technologies to improve human health and the
ability to conduct the very research we need to understand,
treat, and prevent genetic-based diseases. The challenge,
and it is a formidable one, is to nurture scientific exploration,
encourage the translation of these new discoveries into
life-saving medicines, and to put in place public policies
reflective of our core American values that prevent the
unjust, unfair, and discriminatory use of genetic information.
Genetic research and genetic medicine hold great hope for
improving the health of our Nation, but we must act now
to make sure that this hope is not extinguished by fear.
We understand the need to examine this issue closely, and
to find workable solutions to address genetic discrimination
in health insurance and employment.
Today, many states prohibit insurance companies from using
genetic information for enrollment purposes, including determining
eligibility for a plan, imposing pre-existing condition
exclusions, or determining benefits or exclusions under
the plan. In addition, many regulate the use of genetic
information for rating purposes, either upon initial enrollment
Congress has also addressed several key discrimination
issues in Title I of the Health Insurance Portability and
Accountability Act (HIPAA) in 1996. The law prohibits discrimination
in enrollment in group plans based on health status (including
genetic information), prohibits increasing the contribution
rates of an individual in a group plan based on his or her
genetic information, and prohibits using genetic information
in the absence of a diagnosis as a pre-existing condition.
THE NEED FOR LEGISLATION
Further measures are needed to address the following
discrimination issues that were left unresolved by HIPAA.
First, the Administration believes that insurers in the
individual market as well as the group market should not
be permitted to deny enrollment based solely on a healthy
individual’s genetic predisposition to a future disease.
No one should be blocked from this coverage because their
genetic information indicates that they might one day develop
a particular disease or condition.
Second, the Administration believes that insurers in the
individual and group markets should be prohibited from adjusting
health insurance premiums based solely on the genetic predisposition
for future illness or disease of an individual or group
of individuals. Patients should know that they may be tested
and receive important information without the threat of
skyrocketing premiums. They should feel confident and comfortable
in seeking genetic testing and other appropriate medical
treatments. Insurers in the individual market must continue
to have access to and be able to use information about an
individual’s current health status in making underwriting
decisions, but predictive genetic information—in absence
of a diagnosis related to such information—should be protected.
The Administration believes these changes will greatly
reduce the potential for genetic discrimination in health
In Title II of HIPAA, the Congress gave the Administration
the authority to promulgate a Privacy Rule that protects
the uses and disclosures of individually identifiable health
information--including genetic information. The resulting
Rule is very broad and comprehensive. Compliance with the
Privacy Rule is required by April 14, 2003 for most plans,
providers, and clearinghouses, and by April 14, 2004 for
small health plans.
One of the goals of the HIPAA Privacy Rule is that all
health information should be afforded the same high standard
of privacy protection. The Administration believes that
the Privacy Rule affords the appropriate level of protection
for all individually identifiable health information, including
genetic information. Having separate rules for genetic information
could actually be harmful. If providers have different rules
for different types of information, the potential for confusion
or unintended misuses might actually increase. Consistent
rules for privacy should be the goal.
Looking ahead, all Americans should benefit from the advances
in genetics made possible by the Human Genome Project, but
if the public does not feel protected from genetic discrimination
they may be denied that chance. We can foresee in the next
ten years, predictive genetic tests will exist for many
common conditions where interventions can alleviate inherited
risk. But achieving health benefits from these research
advances may not be possible without protections from genetic
The President and the Administration support enactment
of legislation to protect all of us from being discriminated
against based on our genetic make-up. As the President stated
earlier this week at the Medical College of Wisconsin, "Genetic
information should be an opportunity to prevent and treat
disease, not an excuse for discrimination."
As we begin a new age of genetic medicine, now is the time
to enact genetic non-discrimination legislation in order
to provide the necessary safeguards to enable all of our
citizens to benefit from the genomic revolution. The Administration
welcomes your focus on genetic discrimination and looks
forward to working with this Committee on this important