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
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.
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