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America
About face: part III
Stem Cells — Changing My Personal Course
From Embryonic Stem Cell Support to Its Opposition
By James P. Kelly Biotech Writer

| Paralyzed US actor Christopher Reeve with his son Will and wife Dana. | "The truly frightening thing about the scientific mind,' in my experience, is that all things are a means to an end, and the 'end' is only defined by what a particular scientist finds interesting or profitable." So says an American scientist who does not want to be named. Why? Her statement questions the motives of research ambitions. It suggests that the purpose of science may not be to serve mankind, but rather to serve itself.This scientist, like many in her profession, depends on America's NIH for funding, or on non-profit foundations like the Christopher Reeve Paralysis Foundation, the Junior Diabetes Research Foundation, or the Michael J. Fox Parkinson's Foundation. They depend on the editors of research journals such as Science, Nature, and the New England Journal of Medicine to publish their work. They depend on university department heads, administrators, and professors for tenure and pay checks. In today's scientific climate it can be professional suicide for researchers to publicly question the medical worth of industry-preferred agendas, like embryonic stem cell (ES) and cloning research, or to expose the myth of 'science serving man.' The public pays for basic science through public funds and non-profit donations and the public expects its taxes and donations to lead to treatments and cures. Scientists and research-related industries (academia, non-profits, pharmaceuticals, and biotech) plant these expectations by hyping the medical "promise" of their work. Yet James Battey, who directs stem cell research at NIH, painted quite a different picture to Rick Weiss of the Washington Post:"The public should understand that science is not like making widgets," said Battey. "We're exploring the unknown, and by definition we don't know where it's going to take us."On the surface this sounds admirable, as though scientists are modern explorers, braving the dark unknown of the petri dish.Rubbish.Hundreds of millions of humans face horrible deaths every year, ALS, Cancer, AIDs, etc., or suffer unspeakable disabilities. They not only look to science with hope, as does all mankind, they pay for it with their money and lives. Are we to believe that practicality, reason, and common sense can play no part in advancing medical science efficiency? Are we to believe that the goal of science is to produce "miracle treatments and cures" when it's in the interest of scientists for us to believe it, but for us to accept that its goal should be "the pursuit of knowledge" when it's not? Laurance Johnston, Ph.D., former Director of Scientific Review for the NIH Institute of Child Welfare and Human Development, presents a graphic view of science."It's all about control of information and appearance of knowledge; isn't it?" says Johnston. "One can either work to disseminate knowledge, or work to control it. The latter is often sanctimoniously justified in the name of science and the need to protect those 'poor defenseless individuals with SCI' from adverse consequences of deleterious information that hasn't been blessed by 'the experts.'"What might scientists do to protect their "right" to explore particularly "interesting or profitable" regions of the unknown, while convincing the public to pay for the trip? The following excerpts appeared in research journals before March 5, 2002."These results indicate that bone marrow cells can differentiate in vivo into myelin-forming cells and repair demyelinated CNS." [Sasaki M. Glia. Jul 2001] "Transplanted [adult] olfactory ensheathing cells and schwann cells enhanced the remyelination of demyelinated CNS axons. Improved conduction properties were similar and more effective than that induced from isolated [fetal] CNS tissue which included oligodendrocytes." [Imaizumi T. No To Shinkei Jul 2000]"The remyelinated axons conducted impulses at near normal conduction velocities. This suggests that a common neural progenitor cell for CNS and PNS previously described for embryonic cells may be present in the adult human brain and that transplantation of these cells into the demyelinated spinal cord results in functional remyelination." [Akiyama Y. Exp Neurol Jan 2001]"The results suggest that MSCs [adult bone stromal stem cells] are able to differentiate into myelinating cells, capable of supporting nerve fiber re-growth, and they can therefore be applied to induce nerve regeneration." [Dezawa M. Eur J Neurosci. Dec 2001]By March 5, 2002 science knew that the adult body has at least five sources of cells able to myelinate Central Nervous System (CNS) nerves. [schwann cells, bone marrow stem cells, neural stem cells, olfactory ensheathing cells, oligodendrocytes and oligo-precursors] Head-to-head studies had shown that adult cells were superior to fetal counterparts for this purpose. Yet, on March 5, 2002, paralyzed actor Christopher Reeve told a U.S. Senate committee, "In my own case," Reeve testified, "I require remyelination of nerves. That means replacing the conductive code of fat, myelin, that allows electricity to come down from the brain to the central nervous system for function. At the moment only embryonic stem cells have the potential to do that, and experiments are being done now in larger animals demonstrating that."Reeve's testimony contained seven key statements that were scientifically false, highly misleading, or not founded in fact. Yet Reeve, President of the Christopher Reeve Paralysis Foundation, surely wanted to walk as much as I do. How was it possible that Reeve's scientific and medical advisors were ignorant of the studies quoted above. It's simple: They couldn't be.When I read Reeve's testimony I almost fell out of my wheelchair. I could not believe that he would intentionally mislead the Senate or the American People regarding grave matters of public health. Either someone had lied to Reeve — had used him to mislead the Senate — was using him to mislead the public, or Reeve had said what he thought was the truth without bothering to check. I suspect he was misled. I have the use of my hands and arms, so I can sit for endless hours and search Pubmed. Reeve could not. He was at the mercy of 'experts.'Thus the Senate was misled concerning research issues that could effect whether I walked again, whether my neighbor with Parkinson's has a hope to recover, whether a friend with Polio can ever run or dance. For me this cast the embryonic stem cell debate in a totally different light. What if crucial time and money were wasted to develop myelinating cells from embryonic sources? (This is exactly what is happening.) What if the Senate believed that myelinating cells could only be safe for medical use if produced through cloning (which Reeve also led the Senate to believe)? What if similar misrepresentations were taking place regarding other areas of science, regarding other medical conditions (which I soon discovered was occurring)?The 'stem cells and cloning' debates suddenly became far more complex than "religion versus cures." Because my medical condition was being used to mislead the Senate, I felt used and betrayed. However, perhaps Reeve was betrayed far worse.Later that year I debated the practicality of cloning with Reeve at the New York Academy of Sciences. At Reeve's request I tried to tell him of an adult bone marrow clinical trial for ALS and SCI in Turin, Italy. But as I began to speak I was physically muzzled from behind by the scientific moderator of the debate. While I struggled to pull his hands from my mouth, fifty reporters looked on in stunned silence and Reeve's handlers quickly wheeled him from the room. Not a word of this reached the public and Reeve remained in the dark.Would those who misled and exploited Christopher Reeve hesitate to exploit the rest of mankind? Speaking for myself, I wouldn't want my life or future in the hands of such people. And yet they're holding both. As he had touched many others around the world, actor Christopher Reeve touched my life — but not as his handlers intended. Reeve opened my eyes to an unfolding global tragedy. He made me realize how far those pursuing a multi-billion dollar goldmine in long range basic research will descend to achieve their ends. I eventually concluded that while it appears that science and industry are using disability and disease to exploit human fetal and embryonic life, the truth is far worse. The push for ES and cloning research may exploit us all. But these realizations came later, after I began studying in earnest the 'industries' of science, embryonic stem cells, and cloning. For reasons presented in parts one and two of "About Face," in June of 2001 I urged President Bush to support embryonic stem cell research. By the time he approved Federal funding of research using existing embryonic stem cell "lines" (in August of that year) I had begun to question the medical practicality of ES research and clinical use. {Part four will explain my reasons in greater detail.) To me it seemed increasingly impractical for society to commit massive research resources to tackling complex safety and performance issues linked to ES cells, including rejection, epigenetic instability, tumor formation, or teratoma formation. It seemed impractical to pay science to puzzle over turning ES cells into stable, fully functional adult cells, when adult stem cells are designed to do it naturally. [They're doing it throughout my body as I write this. They're doing it throughout yours as you read it. If they weren't you'd be dead.] "Why," I asked myself, "Should we go out of our way to look for problems to solve?"In the months leading up to Reeve's March 5th testimony I tugged at this question while weighing the medical worth of adult versus embryonic stem cells. The more I questioned the practicality of ES and cloning, the more I wondered why we're being pushed in these directions. I wondered what science and industry might do to take us there.My continued research answered the first two questions. Reeve's testimony resolved the third."We" do not need additional problems to solve, but basic researchers do — as many as they can find or make. Each additional hurdle represents years of future work. The public sees problems in ES safety and performance as roadblocks to their medical use. To scientists they represent future articles in research journals, ladders to professional fame, university tenure, research funding, potential patents, licensing fees, royalties, biotech 'start up' firms, and hype to encourage investment. On the other hand, the efficient advancement of clinical medicine (through cord blood or adult stem cells, for example) would remove the pretexts for research donations and public funding. It would threaten biotech patents and pharmaceutical profits. Gravy trains would derail. Gold-laying geese would fly away (or rise from their wheelchairs and walk).Those who see science as an end in itself will stop at nothing to achieve their ends. Nothing.
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James P. Kelly, who serves as biotech writer for The Seoul Times, is the director of the Cures 1st Foundation, Inc. in the US. As a paralyzed American research advocate, Director Kelly promotes practical research for the sake of treatments and cures. Mr. Kelly has testified on cloning before committees in America's Congress, in debate with actor Christopher Reeve, and most recently on CNN International.
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