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Subcommittee on Commerce, Trade, and Consumer Protection
July 11, 2001
12:00 Noon
2322 Rayburn House Office Building
Mr. Chairman,
Members of the Committee, I am delighted to be here today and joined by my good
friends Congresswoman Louise Slaughter and Dr. Craig Venter. I appreciate the
opportunity to testify on The Potential for Discrimination in Health Insurance
Based on Predictive Genetic Tests.
As you may recall,
last summer in a special ceremony at the White House, the completion of the
"rough draft" of the human genome was announced. This was a
significant milestone and has been compared to the incredible discoveries of
Galileo.
The Human Genome
Project, with its goal of producing detailed maps of the 23 pairs of human
chromosomes and sequencing the DNA that make up the human genome, has identified
genes responsible for diseases such as glaucoma, colon cancer, and cystic
fibrosis.
With the
identification of these genes, million of Americans are renewed with hope for
promising genetic therapies to cure their disease, or that of a love one. We
have witness in recent years the rapid pace of medical discoveries and growing
optimism for a future with less human suffering.
However, to fulfill
the promise the mapping of the Human Genome holds, we do need to address the
issue of genetic discrimination. For example the presence of a cancer causing
gene may indicate a predisposition but does not guarantee that the person will
contract the disease: How should an employer or insurer respond?
The ethical, social
and legal implications of genetic advances have been the subject of intense
scrutiny and concern. As scientific knowledge about genetics advanced, many
researchers have expressed concerns about how this information will be used.
While genetic information and genetic technology holds great promise for
improving human health, it can also be misused.
Genetic information
can be used as the basis for insidious discrimination....the misuse of genetic
information can be a serious problem, in terms of people's access to employment
and health insurance and the continued ability to undertake important genetic
research. I believe, as do many others that the misuse of genetic information
has the potential to impede medical research.
Privacy and
discrimination are two critical issues regarding genetics. The privacy interests
of an individual and his or her genetic information is important and fundamental
to all Americans, and the protection of privacy can make discriminatory actions
less likely. However, the approach would be to prohibit this potential misuse of
the information by prohibiting discrimination.
These concerns have
encompassed fears of discrimination in many aspects of life, including
employment, and health and life insurance. A study on discrimination found that
a number of institutions, including health and life insurance companies, health
care providers, blood banks, adoption agencies, the military and schools, were
reported to have engaged in genetic discrimination against asymptomatic
individuals. The discriminatory practices alleged included
treating a genetic diagnosis as a preexisting condition for insurance purposes,
refusal by an adoption agency to allow a woman at risk for Huntington's disease
to adopt based on the woman's genetic risk, and termination from employment
after disclosure of a risk of Huntington's disease.
Similarly, another study reported that twenty-two percent of the respondents
indicated that they or a family member were refused health insurance as a result
of a genetic condition.
Mr. Chairman I have
had the honor for the past 14 years to represent Montgomery County in Maryland,
Genome Alley. My district is home to the National Institutes of Health and
hundreds of biotechnology companies such as Celera. As a member of the House
Science Committee, I Chaired the Subcommittee on Technology for 6 years. We held
hearings on the Human Genome Project, the pace of discovery was rapid, the
Project is moving forward., but I was always concerned with the possible misuse
of genetic information.
I have come to the
conclusion that we need legislation that will:
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cover
all genetic information -- including family history -- that predicts future
health risks in healthy individuals.
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prohibit
both health insurers and employers from collecting predictive genetic
information and from using it to discriminate in the health care system and
the workplace.
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provide
individuals who experience genetic discrimination the right to seek redress
through legal action, with access to meaningful remedies.
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ensure
that those entities holding genetic information about individuals will not
disclose it to third parties without the permission of the individual.
Mr. Chairman, in
closing I would like to bring to the attention of the Committee what President
Bush said about genetic discrimination in his radio address on June 23rd.
"Genetic
discrimination is unfair to workers and their families. It is unjustified --
among other reasons, because it involves little more than medical speculation. A
genetic predisposition toward cancer or heart disease does not mean the
condition will develop. To deny employment or insurance to a healthy person
based only on a predisposition violates our country's belief in equal treatment
and individual merit."
Again I would like
to express my appreciation to the Committee to be able to testify today. I do
realized this is in part because I am the lead Republican sponsor for the
Genetic Nondiscrimination in Health Insurance and Employment Act, H.R. 602, a
solid bipartisan bill. I hope as part of this oversight hearing that the many
good merits of this bill will be recognized.
Thank you.
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