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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