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Thread: Why the SCI Community should continue to press on the ESC issue

  1. #1

    Why the SCI Community should continue to press on the ESC issue

    I am having trouble understanding some arguments on these forums that the spinal cord injury community should avoid pressing Congress and President Bush to change the current policy on embryonic stem cell (ESC) research.

    Many polls have shown majority public support (>60%) for research on embryonic stem cells derived from unwanted frozen embryos that will be thrown out anyway. The NIH under President Clinton had proposed a plan to allow NIH to fund such studies in 1999. President Bush suspended this program and substituted a program to fund only those embryonic stem cells derived before August 2001. He claimed that there were >70 embryonic stem cell lines and that these were sufficient for research. NIH has now admitted that only several of these lines were available for the first two years and only 18 lines are today available for American scientists to study. Despite strong evidence indicating that these lines are insufficient and the United States is falling behind in stem cell research, President Bush has refused to consider changing this policy. Worse, he knows the gravity of his decision because he pointed out that embryonic stem cell research holds substantial promise for saving and improving the lives of millions of Americans when he announced his original decision in 2001.

    Recently, 206 members of the House of Representatives and 57 U.S. senators wrote to the President to urge him to change the policy. The policy change could be as simple as allowing NIH to fund studies of embryonic stem cells derived from frozen embryos that will be thrown out anyway. This has nothing to do with cloning or abortions, and would not result in using embryos that would not otherwise be destroyed. Many polls have indicated that a large majority of American voters would favor such a policy change. Many scientists believe that policy change will save and improve the lives of millions of Americans. Most scientists agree that embryonic stem cell biology is critical to understanding development and disorders of development. Almost all agree that availability of human stem cell lines with human genetic disorders would be an invaluable tool for studying and developing therapies for genetic diseases. Finally, availability of human embryonic stem cells would substantially reduce our current reliance on animals to obtain cells for studies of diseases.

    The current U.S. stem cell policy does not have scientific merit or a rational ethical basis. It is an unpopular policy that is based on incorrect assumptions, bad science, and irrational fear. The policy has not saved a single embryo from being trashed while it has withheld the benefits of human embryonic stem cell research, allowed unregulated destruction of more human embryos, and prevented the passage of legislation that would regulate reproductive cloning. It is an indefensible policy from almost every point of view. So, why should the spinal cord injury community not rise in protest of this policy? The suggestion that we should accede to this flawed policy in order to broker a deal to increase funding for adult stem cell therapies and spinal cord injury research would be inappropriate. It would mean abandoning our principles, breaking ranks with many other disability groups, and ultimately hurting science, economy, and people of the United States.

    I have tried hard to understand and respect the view that throwing away frozen embryos is better than using them to save and improve human lives. To me, this view not only does not make sense but is morally wrong. It is as wrong-headed as the unfortunate position taken by Catholic Church and Right-to-Life organizations that we must not allow abortions even when a pregnancy will kill the mother. These organizations believe, for example, ectopic pregnancies should not be aborted even though failure to act would kill both the mother and child. It is bad enough that the baby will die but failure to abort would compound the tragedy by forcing the mother to die as well. Such a position is immoral irrespective of our positions on abortion and when life begins. The situation regarding human embryonic stem cells is similar. Thousands of frozen human embryos are being discarded from fertility clinics every year. The parents do not want them and they have been in storage too long to be safely used to produce babies. Is it better to trash them or use them to save and improve lives? To waste this source of cells is a tragedy.

    Unfortunately, the stem cell debate has been mired in irrelevant hyperbole. Some who favor embryonic stem cells have claimed that they will cure all diseases. Those who oppose the research claim that there is no evidence that they will cure diseases and in fact have not contributed anything to scientific research in the last 20 years. Both are wrong. Stem cells (whether adult or embryonic) will not cure all diseases. In the past 20 years, embryonic stem cell research have contributed a great deal to biological research, including much of what we know about animal genetic disorders. The last is probably the least understood and emphasized aspect of embryonic stem cell research. The issue is not just whether embryonic stem cells can be used for therapy. Restricting embryonic stem cell research will prevent our scientists from making more rapid progress in developing treatments of genetic disorders. At the present, U.S. scientists have very limited access to human cells that have genetic abnormalities that cause serious developmental, metabolic, immune, and other disorders. As Irv Weissman from Stanford pointed out in his Senate testimony, these will provide critical tools for discovery of mechanisms and therapies for disease.

    Much misinformation has been promulgated concerning embryonic and adult stem cells:
    1. Adult stem cells have been proven to work as well or better than embryonic stem cells. This is not true. Adult stem therapies have been studied and practiced for over 20 years whereas embryonic stem cell therapies are much newer and have not yet been tried in humans. Adult and embryonic stem each have their strengths and weaknesses for different conditions.
    2. Adult stem cells are as pluripotent as embryonic stem cells. Again, this is not true. With appropriate manipulations, adult stem cells have been shown to produce a wide variety of cells in culture. However, most studies suggest that adult stem cells do not produce as great variety of cell types after transplantation. Understanding how embryonic stem cells do what they do will help improve adult stem cell therapies.
    3. Embryonic stem cells cause tumors. While embryonic stem cells do have a greater potential to cause tumors, that risk can be significantly reduced or eliminated by differentiating the cells before transplantation, so that the risk is as low as that of adult stem cells. This is a solvable problem.
    4. Cloning is necessary to avoid immune rejection. Blood transfusions and organ transplants have been carried out successfully for many years, by matching a small subset of genes and also by temporary suppression of the immune system. This approach is likely to work as well for both embryonic and adult stem cells. Some evidence suggest that embryonic stem cells are less likely to be rejected than adult cells.
    5. Autografts are the best source of stem cells for transplantation. This is not true for many conditions. For example, juvenile onset diabetes is an autoimmune disorder and an autograft (a self-graft) would be subject to the same disease process and therefore less useful than a heterograft (a graft from another souce). Likewise, stem cell autografts are inappropriate for treating genetic disorders because the stem cells would still contain the genetic disorder.

    These misconceptions are being used to justify the current policy. For example, opponents of embryonic stem cell research have claimed that adult stem cells are as good or better than embryonic stem cells and therefore there is no need to change the current policy. They claim that adult stem cells have cured diseases already whereas embryonic stem cells have not yet done so. They have been spreading fear of embryonic stem cells by claiming that they produce tumors. They have linked embryonic stem cell research and cloning, even though the former does not require the latter to be used as a therapy. Finally, they have been claiming that autografts are the best source of stem cells for transplantation when they are inappropriate therapies for most cases of auto-immune and genetic disorders. The Bush administration chose to believe these misconceptions rather than listen to the advice of responsible scientists. The most eminent scientific advisors of the nation, including the National Academy of Science, have recommended reversal of the current embryonic stem cell policy. Unfortunately, President Bush has chosen to ignore this advice.

    The debate has now become one of comparing the merits of adult and embryonic stem cells. The truth is that we do not yet know enough about stem cells to say one way or the other. What we do know is that embryonic stem cells can be grown indefinitely so that they can be used to treat many people. Adult stem cells can be expanded to some extent in culture but only to the point that they can be used to treat one individual. Most pharmaceutical companies therefore have been reluctant to invest seriously into stem cell therapies because they do not see a business model for adult stem cell therapies. The business of adult stem cell therapies would be primarily providing services to hospitals and laboratories to harvest, grow, store, and transplant the cells. Although proprietary technologies may be involved, there is little protection against competition that comes up with a cheaper and more efficient approach. Although adult stem cell therapies have been practiced for over 20 years, few companies have invested in field because they view adult stem cells therapies as labor-intensive, high-cost, and low-profit therapies. As a consequence, the field is currently dominated by non-profit organizations such as blood and organ banks.

    The paucity of commercial and NIH investment has been devastating for stem cell research in this country. Commercial investment is essential for translating therapeutic advances in the laboratory into clinical therapies. To generate commercial investment, scaleable and protectable stem cell technology must be developed. Despite the great promise of stem cell therapies, most major pharmaceutical companies are waiting for such technologies to be developed before they step in. Therefore, governmental funding of stem cell research is critical. Over the past four years, the NIH has invested less than $30 million per year into embryonic stem research and mostly into cell lines that cannot be used for therapy or commercialized. Given the controversial nature of embryonic stem cells, the thicket of state regulations that govern the sale of embryonic and fetal products, and the uncertain spector of federal regulation of such products, U.S. embryonic stem cell research is now in the doldrums created by our government policy.

    Paradoxically, many people who oppose embryonic stem cell research are not against the use of unwanted frozen embryos. Rather, they are afraid that demonstration of effective embryonic stem cell therapies will lead to "baby factories", cloning laboratories, and abuse of stem cells. The current stem cell policy may encourage realization of these fears by forcing us into a brave new world of half-way technologies. The future of stem cell therapies lies in research that would allow us to create stem cells from any cell of our body. After all, a stem cell is just a cell that expresses certain genes. To achieve this goal, scientists must have access to human embryonic stem cells for research and therapy. By holding back the research, we will only prolong this stage where the cells must be harvested from embryos. The current policy has placed the United States in the worst of all possible situations, where scientists do not have access to human embryonic stem cells and cannot develop the technology needed to reach the next stage.

    American scientists were the first to develop the technology to culture human embryonic stem cells. Now, Americans are not only forced to wait for discoveries from overseas but are not allowed to study stem cell lines derived after August 2001. This will have a devastating impact on research. For example, if scientists in England isolate human embryonic stem cells from people with Alzheimer's disease, amyotrophic lateral sclerosis, schizophrenia, autism, diabetes, and other diseases, American scientists are not allowed to study them because they were derived after August 2001. Although human embryonic stem cells containing genetic disorders are critical tools for studying mechanisms and therapies of these disorders, NIH-funded scientists are prohibited from using these tools. A Chicago Clinic recently isolated 50 embryonic stem cells from people with a variety of genetic diseases including muscular dystrophy. The policy shackles our best scientists.

    Some people think that the whole stem cell debate is just a tempest in a teapot. They believe that progress in adult stem cell research will soon eradicate the need for embryonic stem cell studies. Even though they do not agree with President Bush's policy of restricting federal funding of embryonic stem cell research, they don't think that his policy is harmful because it allows continuation of privately funded embryonic stem cell research. They are wrong. President Bush's policy has already set back U.S. stem cell science by nearly four years. Although he restricted embryonic stem cell research, he did not provide additional funding to accelerate adult stem cell research. Other countries, such as United Kingdom have taken the leadership role in stem cell research by having a sound and consistent policy of stem cell research. Even if NIH were to start investing seriously in stem cell research next year, we may not be able to catch up. Unless we act quickly, the United States will end up being a nation of stem cell users, relying on stem cells created elsewhere.

    In summary, the current U.S. stem cell policy imposed by President Bush is unacceptable. At the same time that it has held back science and has prolonged the suffering of millions of people, the policy has allowed unregulated and unmonitored private destruction and use of frozen embryos. The policy has not saved embryos from destruction, has wasted many thousands of embryos that could have been used to save and improve lives, and may have encouraged unnecessary destruction of embryos. It is an unwarranted policy that harms the nation and its people without achieving its primary goal of saving embryos. The consequences of the policy may well be far more costly than any other decision that the President has made in the past four years. For these reasons, I think that it is an appropriate election year issue for the spinal cord injury community.

    Wise.

    [This message was edited by Wise Young on 07-19-04 at 07:45 AM.]

  2. #2
    Bravo Dr. Young, excellent synopsis. All forms of stem cell research must be supported.

  3. #3
    Senior Member Kaprikorn1's Avatar
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    Wise...remember what i told you...after he is re-elected it will change.

    Kap

    "It's not easy being green"

  4. #4
    Kap, your confidence in Bush is breathtaking. What if he doesn't? He needs to do it before the election. Wise.

  5. #5
    Senior Member poonsuzanne's Avatar
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    Dr. Young,

    Thank you very much for spending your valuable time on elaborating on this issue in such a great detail! I have already called the White House regarding President Bush's policy on ESC. In addition to the talking points below, I requested the operator to kindly ask President Bush what would he do if his daughter has been sitting in the wheelchair since she was 16?

    Dear Members,

    When you are talking to the operator at the White House, you have to behave aggressively because the operator always wants to end the phone call whenever you pause at a point!

    "There is still time for many to call the White House with comments supporting cures for Paralysis. 202-456-1414 It is easy!
    As a voting American, I am calling to ask President Bush to....
    ~expand his policy on embryonic stem cell research.
    ~increase funding for all types of research leading to a cure for paralysis.
    ~expedite human clinical trails.
    ~Explain your personal story and why finding a cure is important to you."


    Suzanne

    [This message was edited by Suzanne Poon on 07-18-04 at 06:09 AM.]

  6. #6
    Junior Member Liane's Avatar
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    Dr. Wise,
    A very interesting article with arguments in favor of embryonic stem cell research. I am shocked the critics of this research say nothing about the fact that thousands of cells are being discarded rather than used for research. I have written to the White House and to my Senators and Congressmen, but have concluded that nothing will change until we have a new President.

  7. #7
    Wise;

    Thank you so much for continuing to educate us on this complicated issue. My family is going at this in a variety of ways. This synopsis gives us the tools to speak and write with confidence.

    Kap;

    I doubt Bush will ever significantly alter his policy for fear of being labled as "flip-flopping" on an issue. He has painted himself into a corner with accusations about John Kerry.

    If Bush is re-elected, we are likely to be marginalized and there has been no stance, hint, leak or appointment to a scientific panel to lead me to believe otherwise.

    John

  8. #8
    Banned Faye's Avatar
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    Originally posted by Wise Young:

    I am having trouble understanding some arguments on these forums that the spinal cord injury community should avoid pressing Congress and President Bush to change the current policy on embryonic stem cell (ESC) research.....

    So, why should the spinal cord injury community not rise in protest of this policy? The suggestion that we should accede to this flawed policy in order to broker a deal to increase funding for adult stem cell therapies and spinal cord injury research would be inappropriate. It would mean abandoning our principles, breaking ranks with many other disability groups, and ultimately hurting science, economy, and people of the United States.
    Thank You, Thank You, Thank You, Dr. Young!!!!

    All of your points are beautifully thought out, and give the sci advocacy community the tools to proceed!!!!

    The recent Senate Commerce, Science and Transportation Committee hearing gave the sci community a platform to speak not only on ASC but also on ESC.

    The platform was well-used by both scientists and politicians. AND.......our sci community should not waste time at becoming more adept in doing the same. Thank you for giving us the tools and helping us unite toward our common goal!!!

    "We have lost so much time already" - Nancy Reagan

    [This message was edited by Faye on 07-18-04 at 10:08 AM.]

  9. #9
    Senior Member DA's Avatar
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    Originally posted by Wise Young:

    Kap, your confidence in Bush is breathtaking. What if he doesn't? He needs to do it before the election. Wise.
    he does it before the election, he loses the election.


    what i dont understand is that esc endless divide, should their b enough to grow for everyone?

  10. #10
    Well said, Dr. Young. I"m not going to say what I think Bush would do next if re-elected - I have no desire to argue the point with anyone - but I suspect we would go backward even further. If he is re-elected, I pray I'm wrong.

    Melissa/Kendell

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