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January 27, 2000 Stem Cell Guidelines NIH Office of Science Policy 1Center Drive, Building 1, Rm 218, Bethseda, MD 20892. To Whom it May Concern. NOTE: WHAT FOLLOWS IS STRICTLY MY OWN OPINION. SUMMARY: The guidelines as written are, in effect, a continuation of the curtailment of vital research imposed on the NIH by politicians who enacted a ban on fetal-tissue research. If the NIH and enlightened legislators made a greater effort to go to the people and educate them about what is really desired and happening in science, they would not oppose the funding for this research, and it would disarm the right-wing extremists who are successfully impeding vital research. These are politicians who care only about their political life, rather than the lives of Americans, young, old, and as yet unborn. They claim to value and cherish life, yet people must suffer or perish because some law-makers, on both sides of the aisle, are too fearful for their political lives to say and do what is reasonable. The majority of scientists and the public not pressure the NIH to continue the curtailment of vital stem-cell research. Reasonable, informed people know that this research is not and cannot be preventing life, but rather, saving life. They know that stem-cell and other pluripotent-cell research being conducted may someday, and in some cases can now: replace lost brain cells caused by Parkinson's, Alzheimer's, childhood disorders, or injury; keep leukemia patients alive years longer; help heart-disease patients grow new arteries, and possibly avoid by-pass surgery; and make advances in virtually every disease category one can name. If the NIH would educate the public, the extremists would not be able to dictate policy to the NIH. Congress, as I understand it does not have control or jurisdiction over the NIH. Why, then, are these few extremists allowed to restrain their own party, the rest of Congress, the NIH, and perfectly legal, responsible research? Please stand up to them and let them try and do their worst. It is an election year, and if only the majority Congress, the NIH, and other government health sectors had the courage to expose these issues to the light of day, I think you would find that these extremists would return to being the silent minority once more. They are not now, and never have been the majority, silent or otherwise. Only the religious right, and many from the party in power, are what stand in the way of stem-cell and other pluripotent-cell research from being federally funded freely for the NIH and others. These guidelines have been created out of fear that the ruling party will do their worst, if we don't give in to their unreasonable demands--demands designed for the sole purpose of blocking this research area entirely. Please repeal these constraints and return to conducting science freely, humanely, and sensibly, unfettered by the extremist minority who rule the majority party of our legislature. Please revise the guidelines so that ethically, and legally scrutinized stem-cell, and pluripotent-cell research can be advanced once and for all, for the greater good of all. FULL TEXT: The guidelines as written are, in effect, a continuation of the curtailment of vital research imposed on the NIH by politicians who enacted a ban on fetal-tissue research. The majority of scientists and the public not pressure the NIH to continue the curtailment of vital stem-cell research. Reasonable, informed people know that this research is not and cannot be preventing life, but rather, saving life. They know that stem-cell and other pluripotent-cell research being conducted may someday, and in some cases can now: replace lost brain cells caused by Parkinson's, Alzheimer's, childhood disorders, or injury; keep leukemia patients alive years longer; help heart-disease patients grow new arteries, and possibly avoid by-pass surgery; and make advances in virtually every disease category one can name. If the NIH would educate the public, the extremists would not be able to dictate policy to the NIH. Congress, as I understand it, does not have control or jurisdiction over the NIH. Why, then, are these few extremists allowed to restrain their own party, the rest of Congress, the NIH, and perfectly legal, responsible research? Please stand up to them and let them try and do their worst. It is an election year, and if only the majority in Congress, the NIH, and other government health sectors had the courage to expose these issues to the light of day, I think you would find that these extremists would return to being the silent minority once more. They are not now, and never have been the majority, silent or otherwise. The politicians who wish to curtail or ban this research care only about their political lives, rather than the lives of Americans, young, old, and as yet unborn. They claim to value and cherish life, yet people must suffer or perish because many lawmakers, on both sides of the aisle, are too fearful for their political lives to say and do what is reasonable. This situation is owing to the emotional rhetoric and exploitation of issues on abortion and cloning by the religious right rather than reason. The party in power, driven by the far right, has managed to sufficiently obfuscate and sensationalize these issues rendering them too hot to touch politically by either party in Congress, or any federal entity. Indeed, some Democrats in office have moved further to the right of reason on this issue out of fear. If an enlightened Republican, Democrat, scientist, or medical organization were to speak up candidly on these issues, they would be cannibalized, and branded a monster. If the ban on fetal tissue had not been imposed on the NIH by the Republican Party, these guidelines would never have been required or become as cumbersome. These guidelines have been created out of fear that the ruling party will do their worst, if we don't give in to their unreasonable demands--demands designed for the sole purpose of blocking this research area entirely; it is an effort to submit to and placate the extremist bullies; it is cowardly. Further, I believe that fears of advanced science held by the uninformed are stoked by conservative extremists, and tend to make the anxious lose their perspective and all sense of proportion, rendering them ripe for manipulation. I must ask people who fear this area of research, if you believe, for example, that deriving cells, components, for research from left over fertilized eggs, which cannot possibly be used for further in-vitro fertilization, is wrong, or a cure at all costs as some have asserted? What would you do with the embryos that are unusable for child bearing? Why is discarding them and, therefore, letting people die and suffer considered pro life and moral? Every time any child is born, the blood from the umbilical cord harbors vast quantities of stem cells that could be used to heal and for research. Yet, we must discard it. Why not routinely use this cord blood to save lives? Why wouldn't this and other means and sources of harvesting cells or tissue be pro life? Wouldn't the freedom to conduct the research areas desired by the NIH ensure that illegal, dangerous methods to obtain tissue would have no reason to exist? The need and, therefore, the demand for these emerging treatments are not going away, as long as there are people dying and suffering. Would you abolish T-cell or stem-cell therapies currently used to extend the lives of leukemia patients by several years? Would you have banned organ transplantation when it was being developed? Would you refuse a life-saving bone-marrow transplant for your child? These therapies, too, were once unheard of and feared. Cells derived from embryos left over from in-vitro fertilization and used in research amounts to mending life from a source that can't be used to create another whole life, but could render a broken, dying life whole. It is a win-win situation: Happily, parents, who would otherwise be childless, will give birth to a child through the science of in-vitro fertilization, and cells used for research may or will, in some cases, mend and/or save lives. What could be better? Organ donation has saved many lives, but sadly, it is a life saved from a tragic death in most cases. Please allow the NIH and other research centers dependent on federal funding to advance vital stem-cell research. Only the religious right, and many from the party in power, are what stand in the way of stem-cell and other pluripotent-cell research from being federally funded freely for the NIH and others. Please repeal these constraints and return to conducting science freely, humanely, and sensibly, unfettered by the extremist minority who rule the majority party of our legislature. Please revise the guidelines so that ethically, and legally scrutinized, pluripotent-cell and fetal-tissue research can be advanced once and for all, for the greater good of all. Respectfully yours, Charlotte Mancuso 650-329-0967 668 Channing Ave. Palo Alto, CA 94301 Co-leader, Young Parkinson's Support Group, Palo Alto, CA Board Member, Peninsula Parkinson's Support Group Sunnyvale, CA Advocate, Parkinson's Action Network, Santa Rosa, and The Parkinson's Institute, Sunnyvale, CA -- Charlotte A. Mancuso *************************************************** For advocacy, medical, and other PD-related material, go to: http://www.onelist.com/subscribe/CurePD-NorCal