Hi S----- -thanks for your interest and comments. I think many scientists are reluctant to get involved in political debates - sometimes just getting footnoted in a political article can result in research funding being terminated or program cancellations. Even though I agree with much of what the new president says, and the courage he has demonstrated in some of his actions, I think that scientists will continue to be cautious until they are more certain about the outcome over the long term. (doesn't that restate the scientific world-view?) The conservative position taken by the drafters of the new NIH stem-cell research guidelines indicates to me that they still don't know how far the new president will allow them to go especially in the face of the reaction from the Council of Catholic Bishops. The NIH probably had a more liberal set of guidelines drafted but decided to lead with the conservative ones until they are more certain of the president's support - that might be decided at Notre Dame this weekend!
Most people who are involving themselves in the stem cell debate are like you - family members or friends of people who suffer from diseases potentially treatable - even curable - through embryonic stem cell research. Many of those people are devoted christians who disagree with the clergy on this issue but are afraid to speak out. (despite what Roosevelt said - there are more things to fear than fear itself - one is being exposed to your co-religionists as a tool of satan and being shunned by your former friends and family. A daily form of terror that we should make war against!) My case of Parkinson's sounds more like your father's - up to this point mainly tremors - more a nuisance than a disease. Thanks again for your comments and support on this
Showing posts with label embryonic stem cell research. Show all posts
Showing posts with label embryonic stem cell research. Show all posts
Saturday, May 16, 2009
Friday, May 15, 2009
my comments to the National Institutes of Health on Embryonic Stem Cell Research
Dear Sirs/Mesdames:
Although I am not an American citizen, my family has lived for three generations on both sides of the 49th parallel so I hope you will take my comments into consideration when you are developing guidelines for embryonic stem cell research. When I was diagnosed as suffering from Parkinson's disease in 1999, I was told that many promising research leads were being followed for the treatment and cure of Parkinson's. The greatest potential for a cure - for Parkinson's and for diseases such as juvenile diabetes and spinal cord injuries - was in embryonic stem cell research. You can imagine how disappointed - in fact, depressed - I was when, under the previous administration, embryonic stem cell research was limited to a few cell lines, funding was restricted and serious impediments were imposed on this area of science - ostensibly for ethical reasons
Ten years have passed since my diagnosis, and although important developments have taken place in Parkinson's research, I believe that the discovery of a cure has now been placed beyond my lifetime. I ask what kind of ethics allows millions of people to suffer the loss of control over their bodies and be forced to live in humiliating dependence on their families and their fellow citizens because a tiny minority of influential clerics believe that life is created at conception whether the embryo survives or - more likely - not. Like those clerics, I am not a scientist but I know what ethics are and I do not believe that a small group of people should have the power to impose their ethics in opposition to the ethical views of a majority of Americans as expressed in resolutions of the last Congress and vetoed by the last president. I am hopeful that NIH in its new guidelines for embryonic stem cell will take into consideration the ethical views of a majority of Americans - including a majority of religious Americans - and eliminate the barriers to research imposed by the previous administration.
I was fortunate to have had an opportunity to attend the First World Conference on Parkinson's in Washington a few years ago and was able to learn about some of the amazing research that has been done from the from the first 'awakenings' with the use of dopamine on encephalitis lethargica by Sachs/Calne to the therapies in dance, exercise and speech development designed to allay specific symptoms of the disease. Unfortunately there was a sense of silent despair at the conference because one of the most promising areas of research had been suppressed based on disputed ethics. With the current presidential order to lift the research ban, the hopes of many Parkinson's sufferers have been restored. Unfortunately, that hope has ebbed because the new NIH guidelines seem to concede too much to those who who consider themselves moral and ethical authorities
Recommendations:
1. Please do not give undue weight to clerics and religious organizations who can organize letter-writing campaigns by a committed minority while the silenced majority of their congregations practice contraception, accept choice on abortion and support embryonic stem cell research to help friends and relatives afflicted with diseases like Parkinson's.
2. Remove the barriers to embryonic stem cell research and accelerate this research to overcome the delays caused by the policies of the last administration.
3. Remove barriers to research on stem cell lines developed from sources other than surplus embryos from in-vitro fertilization at fertility clinics. Stem cells developed by parthenogenesis and using Somatic Cell Nuclear Transfer should be funded.
4. Encourage research that can be quickly transferred to those who are currently suffering to decrease their pain and increase their independence.
I appreciate your consideration of my suggestions and I look forward to a time when, as a result of embryonic stem cell research, diseases such as Parkinson's, juvenile diabetes and paralysis due to spinal cord trauma can be reduced or eliminated.
Yours sincerely
Although I am not an American citizen, my family has lived for three generations on both sides of the 49th parallel so I hope you will take my comments into consideration when you are developing guidelines for embryonic stem cell research. When I was diagnosed as suffering from Parkinson's disease in 1999, I was told that many promising research leads were being followed for the treatment and cure of Parkinson's. The greatest potential for a cure - for Parkinson's and for diseases such as juvenile diabetes and spinal cord injuries - was in embryonic stem cell research. You can imagine how disappointed - in fact, depressed - I was when, under the previous administration, embryonic stem cell research was limited to a few cell lines, funding was restricted and serious impediments were imposed on this area of science - ostensibly for ethical reasons
Ten years have passed since my diagnosis, and although important developments have taken place in Parkinson's research, I believe that the discovery of a cure has now been placed beyond my lifetime. I ask what kind of ethics allows millions of people to suffer the loss of control over their bodies and be forced to live in humiliating dependence on their families and their fellow citizens because a tiny minority of influential clerics believe that life is created at conception whether the embryo survives or - more likely - not. Like those clerics, I am not a scientist but I know what ethics are and I do not believe that a small group of people should have the power to impose their ethics in opposition to the ethical views of a majority of Americans as expressed in resolutions of the last Congress and vetoed by the last president. I am hopeful that NIH in its new guidelines for embryonic stem cell will take into consideration the ethical views of a majority of Americans - including a majority of religious Americans - and eliminate the barriers to research imposed by the previous administration.
I was fortunate to have had an opportunity to attend the First World Conference on Parkinson's in Washington a few years ago and was able to learn about some of the amazing research that has been done from the from the first 'awakenings' with the use of dopamine on encephalitis lethargica by Sachs/Calne to the therapies in dance, exercise and speech development designed to allay specific symptoms of the disease. Unfortunately there was a sense of silent despair at the conference because one of the most promising areas of research had been suppressed based on disputed ethics. With the current presidential order to lift the research ban, the hopes of many Parkinson's sufferers have been restored. Unfortunately, that hope has ebbed because the new NIH guidelines seem to concede too much to those who who consider themselves moral and ethical authorities
Recommendations:
1. Please do not give undue weight to clerics and religious organizations who can organize letter-writing campaigns by a committed minority while the silenced majority of their congregations practice contraception, accept choice on abortion and support embryonic stem cell research to help friends and relatives afflicted with diseases like Parkinson's.
2. Remove the barriers to embryonic stem cell research and accelerate this research to overcome the delays caused by the policies of the last administration.
3. Remove barriers to research on stem cell lines developed from sources other than surplus embryos from in-vitro fertilization at fertility clinics. Stem cells developed by parthenogenesis and using Somatic Cell Nuclear Transfer should be funded.
4. Encourage research that can be quickly transferred to those who are currently suffering to decrease their pain and increase their independence.
I appreciate your consideration of my suggestions and I look forward to a time when, as a result of embryonic stem cell research, diseases such as Parkinson's, juvenile diabetes and paralysis due to spinal cord trauma can be reduced or eliminated.
Yours sincerely
Tuesday, April 28, 2009
A Comment offered to a South Dakota Progressive Blog
Nikinomo:
April 28th, 2009 at 10:22 pm
Prairie Progressive
It appears that not a great deal of thought was put into consideration of legislation banning stem cells when it was first considered by the S. Dakota legislature. The bills sponsors were obviously acting on behalf of the various churches who have - for specious reasons and often in opposition to the sentiments of their congregations - mobilized against this type of research.
I have Parkinson’s disease which, because it may be caused by pesticides is a major problem in non-urban areas where pesticides are used. Embryonic Stem Cell Research seeks a way to use stem cells to replace the dopaminergic neurons that have died in my brain so that I cannot control movement in my limbs and the function of other bodily systems. Unfortunately for a person my age, George Bush, some churches and - regrettably the South Dakota legislature have put the cure beyond my lifetime. But millions of other people can benefit if the ban is lifted - people with Parkinson’s, type one diabetes and spinal cord injuries among many other diseases.
As you point out, scientists are not the best people to communicate their need for support to the public. Science has always been suspicious of media, politicians and religion who prefer uncritical statements of “fact” to the kind of questioning, analytical demands of science’s doubting Thomases. I hope that when legislation is next considered by the SD legislature, legislators and senators will be better informed so that the ban on embryonic stem cell research will be lifted and scientists there can start working - out of true respect for life - on terrible diseases that affect millions of men, women and children around the world.
April 28th, 2009 at 10:22 pm
Prairie Progressive
It appears that not a great deal of thought was put into consideration of legislation banning stem cells when it was first considered by the S. Dakota legislature. The bills sponsors were obviously acting on behalf of the various churches who have - for specious reasons and often in opposition to the sentiments of their congregations - mobilized against this type of research.
I have Parkinson’s disease which, because it may be caused by pesticides is a major problem in non-urban areas where pesticides are used. Embryonic Stem Cell Research seeks a way to use stem cells to replace the dopaminergic neurons that have died in my brain so that I cannot control movement in my limbs and the function of other bodily systems. Unfortunately for a person my age, George Bush, some churches and - regrettably the South Dakota legislature have put the cure beyond my lifetime. But millions of other people can benefit if the ban is lifted - people with Parkinson’s, type one diabetes and spinal cord injuries among many other diseases.
As you point out, scientists are not the best people to communicate their need for support to the public. Science has always been suspicious of media, politicians and religion who prefer uncritical statements of “fact” to the kind of questioning, analytical demands of science’s doubting Thomases. I hope that when legislation is next considered by the SD legislature, legislators and senators will be better informed so that the ban on embryonic stem cell research will be lifted and scientists there can start working - out of true respect for life - on terrible diseases that affect millions of men, women and children around the world.
Sunday, April 26, 2009
Catholics Carry Battle Against Embryonic Stem Cell Research to States
Polls tell us that a majority of catholics support embryonic stem cell research (ESCR) because it holds the promise of treating - even curing - a number of serious diseases such as parkinson's, juvenile diabetes and spinal cord injuries. But churches are based on obedience not democracy so despite the majority view, the church continues to engage in politics to block embryonic stem cell research. After President Obama's recent order restoring support for ESCR at the national level the religious right has now shifted the battle to the states. According to an April 26th article in the Sioux Falls Argus-Leader the church has promised to defeat any attempt in the legislature to lift South Dakota's ESCR ban.
Mr. Benson has a strangely twisted notion of good and evil. According to his definition people suffering from progressive, degenerative diseases should spend the remainder of their lives in painful, humiliating dependency - a burden on their families and their community - because of his church's insistence that fertilized embryos - most of which will die naturally are equal or superior to born human beings. In fact, most embryonic stem cell research uses unwanted excess embryos created artificially in fertility clinics and usually dumped in a landfill if they are no longer required
If Mr Benson and his church honestly believed embryos were persons, they would have them baptized named and, of course, given last rites and burials in consecrated landfills. For the church, embryos are instruments for political organization.
In this case the church doesn't respect life. Their object is political and concern for life is only a slogan developed by their PR people. I suspect that when catholic legislators are tempted to support lifting South Dakota's ban on Embryonic Stem Cell Research in the next legislative session, they will be threatened with exclusion from the sacraments. But at least they will be in company with a majority of catholics who practice birth control and support ESCR because they know that on these issues as on others the church has confused good and evil to achieve its political objectives
"It's a very important issue that strikes very close to who we are as human beings, how we live our lives and how we treat others," said Travis Benson, co-director of the Catholic Diocese of Sioux Falls' Respect Life office.
The church supports adult stem cell research, Benson said, but opposes embryonic stem cell research. Harvesting stem cells from an embryo kills the embryo "which is a human being in the very earliest stages of life," he said.
Supporters of such research say that it can lead to life-saving cures, but Benson says "you should never do evil, even if you can accomplish good with it."
Mr. Benson has a strangely twisted notion of good and evil. According to his definition people suffering from progressive, degenerative diseases should spend the remainder of their lives in painful, humiliating dependency - a burden on their families and their community - because of his church's insistence that fertilized embryos - most of which will die naturally are equal or superior to born human beings. In fact, most embryonic stem cell research uses unwanted excess embryos created artificially in fertility clinics and usually dumped in a landfill if they are no longer required
If Mr Benson and his church honestly believed embryos were persons, they would have them baptized named and, of course, given last rites and burials in consecrated landfills. For the church, embryos are instruments for political organization.
In this case the church doesn't respect life. Their object is political and concern for life is only a slogan developed by their PR people. I suspect that when catholic legislators are tempted to support lifting South Dakota's ban on Embryonic Stem Cell Research in the next legislative session, they will be threatened with exclusion from the sacraments. But at least they will be in company with a majority of catholics who practice birth control and support ESCR because they know that on these issues as on others the church has confused good and evil to achieve its political objectives
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