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January 5, 2001 Conference
Learning to Live with the Human Genome:
Well Reasoned Prudence or Future Shock?
Board Chair, Linda Lake's Opening
Remarks
"Good morning. I'm Linda Lake,
Chair of the Washington State Board of Health. I want to welcome you here
today on behalf of:
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Governor Gary Locke;
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State Supreme Court Chief
Justice Richard Guy;
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State Department of Health
Secretary Mary Selecky;
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DSHS Secretary Dennis Braddock;
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Insurance Commissioner Deborah
Senn; and
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Dean Patricia Wahl of the
Universtiy of Washington School of Public Health and Community Medicine --
Institute for Public Health Genetics and Center for Ecogenetics and
Environmental Health
I am truly honored by all of
these leaders' willingness to commit their organizations to work with the
State Board of Health's partnership with the March of Dimes to sponsor
today's event: Learning to Live with the Human Genome: Well Reasoned
Prudence or Future Shock?
It was not even 50 years ago
that Watson and Crick announced their discovery of DNA with what may turn
out to be the greatest understatement of all time. "This structure has
novel features, which are of considerable biological interest."
An understatement, to be sure,
and one that must have appeared in a professional journal, because that kind
of careful prose would never make it anywhere near USA Today, let alone on
TV or radio.
But President Clinton did make
all the papers last June when he described the near complete map of Watson
and Crick's discovery as "the most important, most wondrous map ever
produced by human kind."
So much has happened in those
intervening years. More than 1,000 researchers across no less than half
dozen disciplines and across six nations have revealed nearly all three
billion letters of our genetic code. This is truly a stunning and humbling
achievement. It is not an overstatement to say we are learning the language
in which the gods created life.
What President Clinton in his
statement celebrated was the very real probability that this profound new
knowledge will give us immense, new power to heal. He told us genome
science will revolutionize the diagnosis, prevention, and treatment of human
disease.
He told us doctors increasingly
will be able to cure diseases like Alzheimer's, Parkinson's, diabetes, and
cancer by attacking their genetic roots. He told us of clinical trials in
which some forms of leukemia and breast cancer already are being treated
with drugs that precisely target the faulty genes and cancer cells, with
little or no risk to healthy cells. And he suggested to us that our
children's children may know the term cancer only as a constellation of
stars.
Last spring, Francis Collins,
Director of the Human Genome Project, told a Congressional Budget Committee,
"At the beginning of the new millennium, genetics has come to encompass
nearly every aspect of health research and...will enhance our concepts of
shared humanity, regardless of racial or ethnic identity."
Last summer, Celera President,
Craig Venter announced his company had sequenced the genome of three females
and two males, who identified themselves as Hispanic, Asian, Caucasian, or
African-American, and their genomes contained no way to tell one ethnicity
from another. When life is reduced to its very essence, we find that we
have many genes in common with every species on Earth, and that knowledge
that genomic research is providing the world will have a profound impact on
the human condition, not only for the treatment of disease, but on our view
of our place in the biological continuum.
With world political leaders and
the very top echelon of the world's biomedical research community making
such statements, there should be great celebration. And yet a CNN-Time poll
last summer reported that 46 percent of Americans polled believed that the
impact of the Human Genome Project will be negative. Why?
The answer to this question is
exactly the sobering realization that motivated state leaders to join forces
to sponsor our conference today. We all know there is a very large, open
question here. It is as British Prime Minister Tony Blair said "...as
humanity, [are we going] to engage in the right cooperation...so that we
shape our destiny in a way that genuinely does benefit all our people, that
makes the most of the possibilities, and faces up to the challenges and the
dangers that (the genetic revolution) poses?".
The truth is we have opened what
Dr. Collins calls "God's Book of Life" at a moment of dangerously low trust
in our public institutions and even in our most sacred systems of faith.
The task for us now is to
outpace our computers as they race to unlock the meaning of the genetic code
with the development of ethical, moral, and spiritual tools to direct the
power of the genetics revolution toward the furtherence of our highest
values.
The first step in that endeavor
is to engage in complete, accurate, honest, and up-to-date communication
with one another about what our scientists now know, what it may allow us to
do, and how we value those possibilities. And it is that process I hope we
can advance today. We may just move it forward a bit. Lee Hartwell and
Paul Billings will educate us on the latest marvels, fears, and policy
efforts to shape our futures through genetics. And our panelists will share
with us their discoveries, insights, hopes, and fears about:
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both the good and the harm that
can come of the vigilant protection of our genetic privacy;
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the potential for genetic based
discrimination in employment, healthcare, and other areas;
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obligations healthcare
providers who know our patients' genetic codes will have;
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new computer technologies that
may make the use of genetic information in diagnosis and treatment
commonplace;
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how our system of legal
protections and private property rights affect and are affected by the
genetics revolution;
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how genetics may combine with
environmental factors to improve or threaten our health; and
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how genetic information may
permit us to determine not only our concepts or marriage, family, kinship,
and race, but the very nature of humanity, and indeed all forms of life.
But until we have oriented,
educated, and supported all of our population in integrating the truly
mind-boggling developments that are the genetics revolution, we will not
have completed the task we have all come here to begin. For that, we will
need all of your efforts, those of your colleagues in medicine, public
health, business, and the law and all of those of a responsible media over
the coming decade.
As we do this, the glowing
rhetoric and unbridled optimism of our research leaders, our journalists and
our political leaders may actually create our greatest challenge - that of
managing unrealistic expectations. As grand as our mapping of the human
genome is, in the final analysis it may result in both more than we can
imagine and less than we fear.
As it turns out, each of us will
learn to live with our knowledge of the human genome in his or her own way.
For my part, I believe President Clinton was right when he said, "we must
not shrink from exploring that far frontier of science. But as we consider
how to use new discovery, we must also not retreat from our oldest and most
cherished human values. We must ensure that new genome science and its
benefits will be directed toward making life better for all citizens of the
work, never just a priveleged few.
As we unlock the secrets of the
human genome, we must work simultaneously to ensure that new discoveries
never pry open the doors of privacy. And we must guarantee that genetic
information cannot be used to stigmatize or discriminate against any
individual or group.
Increasing knowledge of the
human genome must never change the basic belief on which our ethics, our
government, our sciety are founded. All of us are created equal, entitled
to equal treatment under the law...Modern science's discovery of the
remarkable similarity of all human genomes has confirmed what we first
learned from ancient fates. The most important fact of life on this Earth
is our common humanity."
Before I introduce His Honor
Chief Justice Richard Guy and ask him to add his remarks to our welcome this
morning, I want to take a moment to thank several of the people most
responsible for the good old fashioned hard work it took to bring us all
together today. The conference probably would not have occurred except for
the naivete of an intern in the University of Washington's Public Health
Genetics Program, and the predatory instincts of some long time state
government employees.
Ms. Miriam Fay approached Debra
Doyle and Don Sloma last spring with an interest in learning a bit more
about how public health policy is developed. A paper turned into a
conference, and a summer internship turned into a yearlong obsession. The
result is before you today. Sorry for your trouble, Miriam and thanks.
The conference was planned with
the help of an informal steering committee composed of people from each of
the sponsoring agencies and included Chief Justice Richard Guy, Don Sloma,
Debra Doyle, Bill Hagens, Cindy Watts, Asha Singh, and Rachel Hein.
Financial sponsorship was provided through the good offices of Dennis
Braddock and Linda Rolfe at DSHS and their Division of Developmental
Disabilities and Deborah Senn and Bill Hagens at the Office of the Insurance
Commissioner. The lionshare of the real work of producing and mailing
conference announcements, taking registrations, and organizing today's event
fell to the able staff at the Department of Health's Genetics Services
Section. The credit there goes to Stacy Eaves, George Zimmerman, and Sarah
Forker with the financial and personal assistance of the March of Dimes and
the efforts of Rachel Hein.
And now, I want to introduce you
to the man whose vision and determination to begin a dialogue on this issue
in our state inspired us all, the Honorable Chief Justice Richard Guy, of
the Washington State Supreme Court."
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