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Thread: A fervent wish for the coming year

  1. #1

    A fervent wish for the coming year

    On the eve of a brand new year (2003), I would like to express a fervent wish: Let the fear-mongering stop and rationality prevail in the coming year. Several developments over the last year prompted this wish:

    1. "Safe" clinical trials. Since the Jesse Gelsinger case (a young man who died due to inflammation of his liver after gene therapy with a adenovirus vector), there has been an alarming trend by the government to regulate clinical trials so that they are "safe". This is alarming because every treatment has a dark side. For example, the first blood transfusions were done at Bellevue Hospital in New York at the beginning of the century; transfusions carry risks of passing viral diseases and other problems but think of the millions of lives that blood transfusions saved. Likewise, in the early days, 100% oxygen was used to help babies breathe and many became blind before doctors realized that pure oxygen damages cells. When the first antibiotics came out for tuberculosis (streptomycin), it caused deafness in thousands people because the auditory hair cells in our ears are exquisitely sensitive to the drug. When the smallpox vaccine was applied worldwide, many thousands of people who happened to be immune-incompetent got sick and hundreds died. When the first heart operations were done, many thought that it should not be used and most of the early patients died... but cardiac surgery has saved innumerable lives, probably accounting for a significant portion of the 20-year lengthening of the average lifespan of humans on this earth. We must recognize that clinical trials are the means by which the dark side of therapies are found and how doctors learn. Let us regulate but not slow down clinical trials.

    2. Gene modification and therapy. With all the protests over genetically modified foods, a casual reader would have thought that we were being poisoned. Why are people so afraid of genetic modification and therapies? After all, most of our domesticated animals and plants are products of genetic manipulation. Whether we change genes by selective breeding or by inserting a gene, the consequences are not that different. Long before DNA was discovered, we had seedless fruits and chihuahuas, both of which are products of extensive genetic manipulation. Humans have manipulate genes for thousands of years. We have just gotten much better and more efficient at it. While I can understand people choosing not to eat GM foods, opposition to gene therapy is beyond my ken. Do we really want Alzheimer's disease to continue devastating the lives of millions? As Allen Roses (who discovered the association of Apo-E, one of several genes now known to cause Alzheimer's disease) pointed out, the worst situation is to stop science half-way before it has a chance to be realized fully. The ultimate immorality occurs when we can diagnose a disease like Alzheimer's disease but cannot cure it. We have a social, moral, and economic obligation to get beyond this stage. The evils or dangers of gene therapy are trivial compared to the terrible toll of genetic diseases. Let us place people first and our fears second.

    3. Embryonic stem cells. There is probably no scientific subject that has been the subject of as many misleading news articles as embryonic stem cells. Most of the articles start out with a grandiose statement, suggesting that these are the "master" cells of the body. Some articles paint pictures of thousands of embryos being slaughtered. Stem cells, incidentally, are not the "master" cells. If anything, they are "slave" cells that go where they are needed to build and repair tissues. They do not command the tissues. Rather, the tissues command them. In the not so distant future, I expect that we should be able to turn any cell into a stem cell by turning on the right set of genes. So, the fears that study of embryonic stem cells will lead to "baby factories" are baseless. The irony is that because scientists have not been allowed to study them or to understand human embryonic cells for nearly 20 years, we still don't understand what they do and how they do it. Do people really believe that it is better to throw frozen fertilized eggs away than to use them to help dying and disabled people? Let us not slide down the slippery slope of irrationality.

    4. Cloning. To read the newspapers, you would have thought that we are in a middle of the Clone Wars. Please, we are surrounded by clones. Every identical twin is a clone. Do we run screaming away when we see a set of identical twins? No way. We know that twins are not inherently unnatural, evil, or disgusting. Yet, Leon Kass (the head our President's Bioethics Council) believes that a clone is so "repugnant" that it must not be tolerated. Lest you think that this is a minority opinion, a large majority of our House of Representatives passed a bill mandating 10 year imprisonment and $1 million fine for every act of "somatic nuclear transfer". If somebody didn't know what somatic nuclear transfer was, they would have thought it to be a most heinous crime. But, it is simply the act of placing the nucleus of an adult human cell into an egg (any egg). This bill not only showed their ignorance of cloning (cloning can be done without nuclear transfer) but shut the door to legitimate applications of cloning to treat female infertility, i.e. cloning an egg to be fertilized by the husband. It is sad. Even sadder is that Congress failed to pass legislation that would have stopped an extremist religious sect (the Raelians) who irresponsibly rushed to clone humans before the technology is ready and who, in all likelihood, will be producing deformed babies. All this would not be if Congress passed a bill that simply prohibits placement of a non-fertilized cell in a human uterus. Let us hope that our leaders come to their senses.

    So, here is a fervent wish for 2003, that the American people will see through all this fear-mongering. I of course wish for more progress and funding for spinal cord injury research but I am confident that we will prevail if these obstacles are removed. Happy New Year.

    Wise.

    [This message was edited by Wise Young on Jan 06, 2003 at 01:25 PM.]

  2. #2
    Damn, I was going to say exactly the same thing..

    Yes, onward and upward!

    Fortitudine Vincimus
    (Through endurance we conquer)

  3. #3
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    Originally posted by Wise Young:

    Even sadder is that Congress failed to pass legislation that would have stopped an extremist religious sect (the Raelians) who irresponsibly rushed to clone humans before the technology is ready and who, in all likelihood, will be producing deformed babies.
    Wise, why is it sad that the U.S. Congress didn't pass legislation against cloning? I don't believe it took place on U.S. soil and Congress couldn't have stopped it. American laws don't govern the world.

    Why must we focus on an extremist religous sect that is creating life? Maybe SCI researchers could share this sense of urgency. Why do you, like other scientist, immediately criticize them and say they are likely to fail? Isn't it possible that Clonaid has more knowledge than mainstream science?

    I don't care what anybody says, creating a life - even a deformed life - is more responsible and moral than ending a life. Maybe it's sad that Congress doesn't address that. You're always blaming a lack of funding for SCI research. Perhaps we should take a few billion dollars out of our defense spending and put it into research.

    I read posts from yourself and others on this forum several times a day. I believe the main delay on the cure for SCI is not funding, ethics, or politics. It's the unwillingness of scientists to take a chance. There are patients out there, such as myself, who are willing to take risks for a large payoff.

  4. #4

    new year

    As in the words of the immortal Jerry Garcia, "This darkness got to give."

  5. #5
    Senior Member alan's Avatar
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    Many politicians are basically idiots, unfortunately. They don't study issues before taking a stand on them. I can respect someone with a differing opinion from mine, IF their opinion is an informed one. A gut reaction is not informed (i.e. "cloning - yuck! Can't allow anything like it.")

    As for scientific progress, the human race, generally, fears change. Look back through history - how many scientic discoveries or theories were immediately accepted by the public, let alone political and religious leadership? The earth not the center of the universe idea got people killed as heretics! Germ theory? Natural selection? And so on.

  6. #6
    Senior Member DA's Avatar
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    I read posts from yourself and others on this forum several times a day. I believe the main delay on the cure for SCI is not funding, ethics, or politics. It's the unwillingness of scientists to take a chance. There are patients out there, such as myself, who are willing to take risks for a large payoff.



    OH MAN DO I AGREE
    if sci researchers had the same passion to cure paralysis as the nutto's had to clone that baby, we would have been cured yesterday. no law, no critics, and no lack of funding could stop sci researchers if curing paralysis was from the heart.

  7. #7
    If there was enough incentive, monetary or otherwise, the willingness to "take a chance" would be greatly improved.

    Science, and its relative applications (sci, others), unfortunately is not altruistic unless the masses are at risk. Not enough masses in sci nor monetary incentive hence the slow progress.

    Fortitudine Vincimus
    (Through endurance we conquer)

  8. #8
    Senior Member DA's Avatar
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    chris...scientist of all ppl should know the 20th century was the century of monetary greed and the 21st century is humanity moving away from those greeds to pursue the betterment of ones self and human kind. i hope the scientist aren't waiting for politicans to take the lead.

  9. #9
    Super Moderator Sue Pendleton's Avatar
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    Originally posted by cjo33:

    I read posts from yourself and others on this forum several times a day. I believe the main delay on the cure for SCI is not funding, ethics, or politics. It's the unwillingness of scientists to take a chance. There are patients out there, such as myself, who are willing to take risks for a large payoff.
    The vast majority of SCI researchers do not work with people CJO. They work with animals. It is not the researchers we need to convince. It is the clinicians. The surgeons and medical doctors who work on people and their institutions are the net step to the cures we need. And how do you think these doctors and their review boards and insurers feel when people like Jesse gelsinger's father go ballistic when a new treatment fails and a patient dies? Yes, Jesse should never have been in the study due to his health status at the time of the intake tests. But people don't blame one doctor or technician. They blame the entire system of clinical trials and we lose all momentum except in cases where death is the inevitable result such as inoperable brain tumors.

    So I would challenge all those who believe that it is the researchers who are holding up cures and ask what their own doctors have said when they asked them for a treatment to restore function. You have asked, right, CJO? For those who haven't yet, get all the research you need and print it off and take it along to your neurosurgeon, neurologist, rehab doc, etc. Ask them. Then if you get a non-comital answer ask to speak to their boss, then to a review board. Hell, how about the AMA?

    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

  10. #10
    I think the two factors that keep us in these stupid chairs are:
    the complexity of the problem, and
    the rarity of the condition.

    I knew before I had my accident that the central nervous system is the last thing you want to smash up (but it didn't make me drive carefully enough!)

    There aren't really many SCI people around (and it isn't obviously fatal)
    and a lot of SCI people are strongly anti-cure, so it's hardly going to be a high priority in the scheme of things.

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