Great speech, Greg!  Who would have thought that in the 21st century we
would be fighting for science.
Ray
----- Original Message -----
From: "Greg Wasson" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, August 04, 2006 9:08 AM
Subject: Speech Given At Beckman Institute Symposium on Stem Cell Politics
and Science


Hi All,

  Aj and I were invited to close out the Stem Cell Panel at the Beckman
Institute's 2006 Young Scholars Symposium, which ran from July 26-29. The
Symposium brings 250 of the country's brightest biology and chemistry
undergrads to the Institute at UC Irvine and awards them two year clinical
research grants on the subject of their choice. With the stem votes in
Congress and the President's veto still on people's minds, we decided to
give these future leaders of the scientific community our honest opinion
about the intersection of science and politics today. We think it was well
received. I can't think of any higher compliment than Hnns Kierstad, the
stem cell researcher who is doing so much for spinal cord injury victims,
walking up to us after our talk and thanking us for saying something that he
felt these students needed to hear. Anyway, here's what we said.


  Good afternoon,

  My name is Greg Wasson, and my wife Ann and I are Parkinson's disease
patient advocates. We have worked with several Parkinson's disease
organizations, including the Parkinson's Action Network, Parkinson's Disease
Foundation, and the Michael J. Fox Foundation. Ann and I jointly prepared
this presentation. We have both had Parkinson's for 11 years. Since
Parkinson is a disease of the brain, I'm going to err on the side of caution
and read from text.

  Let me briefly cover the patient part of patient advocacy.  Our disease,
Parkinson's, is a progressive, degenerative, presently incurable brain
disease, in which cells in the midbrain that produce the neurotransmitter
dopamine die off at an accelerated rate.  Dopamine is largely responsible
for controlling movement, and its absence can also affect certain cognitive
and behavioral functions. Presently Parkinson's medications cannot slow the
progression of the disease; they can only hide its symptoms for a few hours,
providing a "chemical costume" which if they are working properly allow me
to function more or less normally for a few hours.  At eleven years
post-diagnosis I must redose every two hours and twenty minutes. If for
example, I fail to take my next dose at [time], within a few minutes my
ability to move will be severely compromised, and if I miss by an hour or
more I will be unable to walk, stand without falling, dress myself, use
utensils, or speak well enough
 to be understood.  Over time, the medications we take become less
effective.  When we were last here in 2003, my effective time between
medication doses was three hours and fifteen minutes. Even if I take my
medications on time, they may suddenly fail to work properly. While we are
thankful for the medications we take, Ann and I are counting on people like
you to build a better mousetrap to treat our disease before we die from it.
Time is not neutral for people with Parkinson's.

  Now onto the subject of stem cell research, and why you, as scientists,
should be very concerned about the tactics being used by opponents of human
embryonic stem cell research (hESCR), and what those tactics reveal about
the alarming shift in the treatment of scientific issues by a powerful
segment of the American public.

  Since the end of World Was II, the federal government has invested heavily
in the funding of basic scientific research at American universities and in
the private sector. The NIH alone accounts for the two-thirds of basic
medical research funding. When I was growing up in the 1950s and 1960s, the
public respect for science and scientists was at its zenith. Many scientists
were as famous as baseball stars.  Albert Einstein, with his reassuring grin
from under an unruly shock of white hair, was the prevailing image of the
"great scientist."  Robert Oppenheimer, with pipe and slouch hat, and the
other scientists at Los Alamos, were regarded as having helped to end World
War II.  Everyone was aware of Jonas Salk and the polio vaccine, as well as
Linus Pauling, the father of molecular biology.

  The space race was followed closely by the whole nation: the word
"Houston" entered the English language as a synonym for command post, while
the name "Astros" was given to Houston's first baseball team. Science meant
progress, and scientists enjoyed a remarkable freedom of inquiry and were
accorded great respect.

  This national respect for science was reflected in the way in which
scientific opinion was treated by government and the general public.
Scientific opinion did not dictate the scientific policy of the federal
government, but the opinion of scientists was by and large received with
dispassionate respect in the formation of policy decisions. For example, in
the early 1960's President Kennedy sought the advice of scientists in
deciding whether to concentrate on unmanned space flights or to use
astronauts as a major feature of the space program. The scientists told the
administration that unmanned flights would be more valuable in gathering
useful scientific data. "Astronauts" were not particularly necessary to the
program. Kennedy decided, however, that a space program using astronauts
would capture the imagination of the public in a way that unmanned space
flights would not, increasing support and funding for space exploration. He
went with astronauts, former air force
 fighter pilots, and they became national folk heroes who gave the American
public a very personal connection with the space program.

  What is important about this example is that although President Kennedy
rejected the advice of the scientific community in making a fundamental
policy decision about the space program, he did not try to inappropriately
politicize the science itself. He did not try to undermine, alter, or
otherwise interfere with the scientific process, or the conclusions of
scientists, for political or ideological reasons. He did not disrespect the
integrity of science and scientific opinion and turn it into a mere tool of
his own political agenda.

  In recent years, however, a disturbing and dangerous new approach to
scientific opinion and research, including stem cell research, has
developed. And this new treatment of science and scientists will have a
significant and lasting negative impact on the freedom of scientists to
conduct legitimate research, will in fact slow the progress of science
itself, unless it is addressed vigorously and forcefully by all those are
who committed to the freedom of scientific inquiry, including scientists
themselves.

  From our perspective as members of the patient advocacy community, we have
witnessed firsthand the development of this dangerous phenomenon - that is,
the abuse and misuse of scientific research and scientific conclusions for
purely political purposes without respect for the weight of scientific
opinion. This "politicization" of science has resulted in the distortion and
misrepresentation of commonly accepted scientific opinion, the suppression
by government of science which does not comport with particular political
ideologies, and a dangerous reliance on "fringe science" to justify
political decisions concerning scientific policy.

  This unprecedented politicization of science and scientific debate is
primarily reflected in the approach to science taken by the Bush
administration and the voter base critical to his election and re-election,
the extreme right wing of the Republican Party, particularly the religious
right.  Each of you, as members of the scientific community, should be aware
of the threat that the administration's "War on Science," as it has been
called, poses to your freedom to engage in legitimate areas of scientific
inquiry, including stem cell research.  As Nobel Laureate and prominent stem
cell advocate Paul Berg has said, "if left unchallenged, the Bush
administration's deliberate misrepresentation and frequent outright
disregard of science advisory processes, and the extent of its anti-science
bias in government policy-making, will have serious consequences for the
nation's economy, health, and security."

  We can never hope to entirely separate science from politics, but science
must not be allowed to be consistently and knowingly distorted or misused as
just another tool to accomplish a purely political end. That is where the
current administration has repeatedly and dangerously crossed the line,
attempting to undermine the regard for science itself, interfering with the
scientific process, and attempting to slant, alter, and suppress the results
of legitimate scientific inquiry.

  Examples of the misuse, misrepresentation, and distortion of scientific
research and opinion, as well as the bullying of scientists, by the current
administration and its more extreme cheerleaders in congress, are abundant.
From environmental issues such as global warming, to the effectiveness of
condoms in preventing the spread of sexually transmitted diseases, to the
disappearance of huge amounts of commonly accepted but ideologically
inconvenient scientific data from government websites, to the battle over
embryonic stem cell research, the current administration has approached the
importance of science to policymaking with a disregard and disrespect not
seen since John Scopes was convicted of the crime of teaching evolution in
the public schools in Dayton, Tennessee in 1925.

  To understand the depth and seriousness of this new war on science,
consider the actions of Congressman Joe Barton of Texas, Chairman of the
House Committee on Energy and Commerce. Last year Barton, who has close ties
to the fossil-fuel lobby, initiated an investigation into the careers of
three U.S. climatologists whose work helped establish that man-made carbon
emissions were partly responsible for global warming. Barton demanded
details of all of the scientists' funding sources, their research methods,
and copies of everything they had ever published. He claimed the information
was necessary because Congress was going to make policy decisions drawing on
their work, and his committee needed to check its validity.
  Eighteen of the country's most influential scientists from Princeton and
Harvard wrote to Barton expressing "deep concern" about Barton's motives for
investigating the scientists. Rep. Henry Waxman, a senior Californian
Democrat, complained that the hearings were a "transparent effort to bully
and harass climate-change experts who have reached conclusions with which
[Barton] disagrees."

  Numerous other examples of the misuse and distortion of science came to
light in 2004, when the Union of Concerned Scientists released evidence that
the Bush Administration had repeatedly suppressed and distorted scientific
knowledge and undermined scientific advisory panels. The cases cited
detailed incidents of suppression and distortion of scientific knowledge on
issues ranging from mountaintop removal strip mining to endangered species.
There were numerous accounts of political interference with independent
scientific advisory panels, most notably at the NIH. In response, 48 Nobel
laureates, 62 National Medal of Science recipients, and 127 members of the
National Academy of Sciences signed a statement calling for an end to these
practices and the restoration of scientific integrity in federal
policymaking.  Janet Rowley, recipient of the National Medal of Science, and
at that time a member of the President's Advisory Council on Bioethics,
explained why she signed the
 scientists' statement. "Our government has a responsibility to consider
accurate scientific evidence when it makes decisions that affect human
health. I have seen first hand through the President's Council that this
administration distorts scientific knowledge on stem cell research, which
makes it increasingly difficult to have an honest debate in a field that
holds promise for treatment of many serious diseases like Parkinson's and
juvenile diabetes."

  Let's look in more detail at the use and misuse of science in the fight
over stem cell research. Through an intense campaign over the last several
years to educate the public about the potential of embryonic stem cell
research, patient and scientific organizations have succeeded in turning
almost 75% of the citizenry into supporters of escr. We recognize that stem
cell supporters have sometimes exaggerated the power of stem cells to find
quick fixes for complex chronic illnesses, and such misrepresentations must
be acknowledged and not repeated.

  In comparison, however, the most vocal opponents of stem cell research,
including the Bush administration and the anti-abortion wing of the
religious right, have knowingly engaged in a strategy of distortion,
misrepresentation, and outright lies about stem cells and stem cell research
that is nothing short of shocking in its brazen disregard for the truth.

  Four major pieces of stem cell legislation were considered by the 109th
Congress. One of those bills, the Stem Cell Research Enhancement Act, also
known as the Castle-Degette Bill, which was supported by most patient and
scientific advocacy organizations, would have allowed scientists to conduct
research on excess frozen embryos from In Vitro Fertility clinics - embryos
that would otherwise be discarded and destroyed. That bill was passed and
sent to the President, who promptly vetoed it. The veto was filmed, showing
the President surrounded by several so-called "snowflake" children - that
is, embryos "adopted" from IVF clinics and then implanted in a woman's womb
and brought to term. The presence of the children was a knowing
misrepresentation of fact. It implied to viewers that "embryo adoption" was
a viable alternative to the destruction of excess IVF embryos. Stem cell
opponents know, however, that only 128 "snowflake" embryos have been adopted
from the 400,000 or
 more embryos that remain frozen in IVF clinics. Furthermore, the
destruction of up to thirty frozen embryos was sometimes required before an
"embryo adoption" pregnancy to term could be achieved. Even allowing for
embryos that are still being kept in clinics in the unlikely event that the
couple that produced the embryo wants to implant it to have more children,
there are still well over 100,000 excess embryos slated for destruction.
Snowflake adoptions obviously have had a statistically insignificant impact
on that number. Yet by surrounding himself with "snowflakes" the President
was sending the opposite message to Americans, and that message was a lie.

  Perhaps the most stunningly cynical aspect of the position of most of
those who oppose the use of excess IVF embryos for life-saving research is
their silence about, or, in the President's case, public support for In
Vitro Fertilization. Standard IVF procedures deliberately create excess
fertilized embryos in order to allow the most healthy to be chosen for
implantation. Both the couples receiving IVF treatment and the doctors who
perform the treatment understand that the remaining embryos will be
discarded. That of course is why there ARE 400,000 excess embryos in IVF
clinics. The President calls the destruction of those embryos for medical
research "murder," but he publicly supports the procedure that creates those
doomed embryos. He does so because IVF is extremely popular with voters.

  The fact that four bills were under consideration by Congress two weeks
ago is itself an example of the distortion and manipulation of science to
achieve a political end.  In addition to the vetoed Stem Cell Research
Enhancement Act, Congress considered the Alternative Pluripotent Stem Cell
Therapies Enhancement Act. This legislation would have prohibited public
funding of embryonic stem cell research, but funded research using adult or
umbilical cord stem cells. Opponents of embryonic stem cell research have
insisted that research on adult stem cells is as promising as research using
embryonic cells, despite the fact that the consensus of scientific opinion
holds the opposite to be true. Adult stem cells are claimed to have cured
"dozens" of diseases, a claim which is patently false. Adult stem cells can
and are being used to treat diseases, particularly blood born diseases such
as leukemia, but most scientists believe that the inherent plasticity of
embryonic stem
 cells, their ability to differentiate into many different cell types, makes
them more promising for disease research. Even Catherine Verfailles of the
University of Minnesota, whose work with adult stem cells has been hailed by
escr opponents, has distanced herself from extreme claims for the promise of
adult stem cells. "My work is being misused," she has said. "They have put
words in my mouth."

  The current scientific champion of adult stem cells, paraded before
Congressional committees by stem opponents like Sen. Sam Brownback and Rep.
Dave Weldon, is David Prentice, a former professor at Indiana State
University and now a senior fellow at the Family Research Council, a
conservative Christian group. He claims that adult stem cells makes research
using embryonic stem cells unnecessary and that adult stem cells have been
used to cure or treat 65 different diseases. But his claims are disputed by
both the National Institutes of Health and the International Society for
Stem Cell Research. This is an example of politically motivated "fringe
science" being used to discredit the conclusions of the vast majority of the
scientific community.

  The alternative adult stem cells bill was designed to provide political
cover for politicians who oppose embryonic stem cell research but want to
say they support "stem cell research." It was a cynical political ploy, and
though it passed 100 to 0 in the Senate, it was seen as the smokescreen that
it was and voted down in the House.

  The Fetus Farming Prohibition Act was passed by both houses and signed
into law, but the Act is viewed as a joke by most politicians. Sponsored by
Sam Brownback and Rick Santorum, it prohibits the creation and sale of
embryos for research, so-called "fetus farming." But there is no evidence
that such a trade exists or ever will. The same argument was used to oppose
organ transplantation a quarter century ago, and no "organ farms" have been
uncovered to date.

  Which brings us to the most pernicious legislation of all, the
Brownback/Weldon Human Cloning Prohibition Act, which would criminalize
Somatic Cell Nuclear Transfer, including therapeutic cloning, and would
throw any scientist or patient using or benefiting from SCNT research in
jail for 10 years and fine them $1,000,000 dollars. Remarkably, this bill
was passed in the House by large majorities in 2002 and 2003. Only after
intense education efforts by patient advocacy and science organizations were
these bills stopped in the Senate. Continuing advocacy work has kept them
from reaching the floor of the House or the Senate since that time, but they
remain alive in committee and continue to threaten both scientists and
patients.

  So what is the message that we bring today as patient advocates to you as
young scientists. The message is that science, and scientists, are under
serious attack in a way never before seen in this country. The message is
that the freedom of all scientists, not simply scientists working with stem
cells, to engage in legitimate scientific inquiry is in real danger. The
message is that scientists are being harassed and threatened with prison
when their research collides with the ideology of those in power in the
White House and their more extreme allies in Congress. Most importantly, our
message is that it is up to all of us, patients, scientists, and ordinary
citizens to become advocates for and defenders of the independence of
scientific thought. We must stand up to the bullies and extremists who
threaten the freedom of those whose work down through the centuries has
shined a light into the darkness and increased our knowledge about the world
and the way it works.

  We fail to do so at our peril.





                                  "Willy Loman never made a lot of money.
His name was never in the paper. He's not the finest character that ever
lived. But he's a human being, and a terrible thing is happening to him. So
attention must be paid...Attention, attention must finally be paid to such a
person." - Arthur Miller - Death of a Salesman



















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