message from Laura Eckart, Advocacy Associate, Parkinson's Action Network


TESTIMONY OF JOAN SAMUELSON, PRESIDENT, PARKINSON'S ACTION NETWORK

BEFORE THE SENATE SUBCOMMITTEE ON SCIENCE, TECHNOLOGY AND SPACE COMMITTEE
ON COMMERCE

MAY 2, 2001

Mr. Chairman and members of the Subcommittee, thank you for this
opportunity to testify about important issues that arise on the cutting
edge of high-tech, life-saving biomedical research.  As one of more than a
million Americans who suffer from Parkinson's disease, this issue has deep
personal significance.  I appreciate the opportunity to submit my testimony
for the record and am sorry I could not appear before you in person.

The Parkinson's Action Network was created in 1991 to give voice to a
community that has been largely invisible, and as a consequence has not
received the federal research investment equal to its great potential.  The
Network's mission is to educate the country and its leaders about the need
to speed research, deliver breakthroughs and cure this dreadful disease.

Parkinson's is a devastating progressive neurological disorder that makes
it difficult to walk, causes uncontrollable tremors, and in its final
states robs individuals of the ability to speak or move.  Parkinson's is
caused by the degeneration of brain cells that produce dopamine, a
neurochemical controlling motor function.  There is great reason for hope,
however.  In the last several years, scientists have made tremendous
progress in the search for a Parkinson's cure.

One of the most promising lines of research involves using human embryonic
stem cells -- the cells made available by leftover frozen embryos created
by and for couples undergoing the scientific miracle of in vitro
fertilization.  Stem cells are the building blocks of the body, with the
ability to divide indefinitely and differentiate into virtually any type of
cell in the human body.  Scientific experts testifying before Congress in
December of 1998 named Parkinson's as the first disorder that they expected
to benefit from stem cells, and predicted it could be done within a decade
-- and as soon as five years -- if the funds needed to tackle this problem
were available.

Since embryonic stem cells were first isolated by scientists at the
University of Wisconsin and Johns Hopkins University in 1998, their
enormous potential to save the lives of untold millions of Americans has
become increasingly evident.  Their promise lies in their ability to become
life-saving dopamine cells for Parkinson's patients, bone marrow cells to
treat cancer, insulin producing islet cells for patients with juvenile
diabetes, just to name a few possibilities.

Therapeutic cloning, the subject of this hearing, could potentially speed
this line of research by providing a new source of stem cells.  However,
before I go any further, I want to state clearly and concisely that the
Parkinson's Action Network steadfastly opposes human reproductive cloning.
We agree with the other witnesses testifying at this hearing, who we
believe represent the overwhelming view of the scientific community,
Members of Congress and other Americans that human reproductive cloning is
dangerous and ethically questionable and should not be pursued.

Having said that, the Parkinson's Action Network does support further
research on therapeutic cloning of cells that could be used to replace
damaged cells in patients with Parkinson's and many other diseases.  Unlike
reproductive cloning, therapeutic cell cloning will not lead to the
creation of a human being.  What it will do is provide another source of
stem cells that could differentiate into dopamine producing cells,
potentially producing a cure for Parkinson's disease.

I am not a scientist, but I am someone who struggles through each day with
a chronic illness.  I speak for the larger Parkinson's community for whom
time is not neutral.  We need a medical rescue and we need it now.
Scientists agree it is possible this decade.  To shut down one avenue of
medical research that could speed the pace of a cure would be unthinkable
-- lives would be lost.  With appropriate ethical safeguards, we must
aggressively pursue all forms of stem cell research in order to realize its
potential as soon as humanly possible.

Opponents of stem cell research have tried to lump together human
reproductive cloning and therapeutic cloning and mislead the public into
thinking they are the same thing. There is virtually unanimous agreement
that cloning a human being -- creating a duplicate person -- is not
something that should be attempted.  Cloning potentially life-saving cells
-- each smaller than a pinprick -- is another story.  Why shouldn't those
of us suffering from deadly diseases be able to use one part of our bodies
to cure another part?  Therapeutic cloning could allow us to do just that
by "growing" new cells that could replace those that are damaged or lost.

Additionally, some argue that embryonic stem cell research is not necessary
at all.  They say "adult" stem cells may be just as effective and have
seized recent press accounts describing research on fat and placental cells
as potential sources of stem cells and used them to argue that embryonic
stem cell research may no longer be necessary.  This is simply untrue.

The potential value of "adult" stem cells is much less certain and experts
in this field of research agree that it will take years of further study to
determine their therapeutic potential.  As Doug Melton, Ph.D., Chairman of
Harvard University's Department of Molecular and Cellular Biology, pointed
out in an April 22 letter to the Washington Post, such claims are
"extremely premature."  He explained that "...fat cells have not yet been
shown to be able to differentiate into cells of any kind.  Nor has it been
shown that the cells studied are truly stem cells..."

As Congress begins to debate legislation that would regulate or ban human
cloning, the Parkinson's Action Network urges you to ensure that such
legislation does not impede cell research that could lead to cures for
devastating diseases such as Parkinson's, Alzheimer's, cancer, diabetes and
others.  If Congress stands in the way of this research, millions of
Americans will be forced to wait as the clock ticks, enduring unnecessary
suffering and death.

Again, I thank the Subcommittee for the opportunity to submit testimony for
the record.

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn