Daily Archives: May 24, 2009

My Comments to the NIH

Tuesday is the absolute last day to comment to the NIH on embryonic stem cell research. Please take a few seconds to click here and make a statement against federal funding of ESCR and *for* federal funding of adult stem cell research.

Here are my comments:

Dear NIH,
I have a genetic disorder called Marfan syndrome. When I was a child, my parents were very active politically. “Reagan Democrats,” they were active in teachers’ union, pro-life and birth defect related causes. My father was vice president for communications of the National Marfan Foundation. My parents attended the 1986 NORD conference, where my father sat at dinner with the director of the NIH.
I was one of the 1,000 patients in the study which helped isolate the FBN-1 gene responsible for Marfan syndrome. With 10,000 nucleotides on the Marfan gene, and only 1,000 participants, they did not expect to find the same nucleotide mutation in more than one patient, but they did. They found my exact mutation in three people. As I was the closest, they asked me to donate some skin tissue so they could study my stem cells. I gladly volunteered.
I believe very strongly in medical research. I believe very strongly in alleviating suffering when possible.
But I also believe very strongly that the ends never justify the means, and that medical treatments derived from unethical practices cannot be used ethically by patients.
My mother has an autoimmune disease, and back when they first said she had Multiple Sclerosis, when she and I would say we’d never accept treatments derived from fetal tissue research, most people said we were “nuts.”
To that end, my wife and I conscientiously object to vaccinations that are derived from fetal tissue research and culturing.
I was very troubled about 5 years ago when I learned of the development of a “stem cell bank”. People who carry various genetic disorders, including Marfan syndrome, are asked to use in vitro fertillization, then “pre-screen” embryos that are tested positive for the genetic disorder. Those “defective” embryos are “donated” to the “stem cell bank” for research, while the “healthy” embryos are “used” by the parents. This very language is terrifying when knowing we are dealing with individual living human beings with their own unique genetic codes.
We look at our seven year old daughter, positive for Marfan syndrome, and what a beautiful, loving, happy child she is. She ahs this amazing charisma. We go to stores we haven’t visited in a year, and people look at her and say, “OH! I remember yoU!” If we followed the above “advice,” if we used in vitro fertilization (or didn’t reproduce at all, as many Marfans “choose”), she wouldn’t be here.
Meanwhile, beacuse of my Marfan syndrome, we are much more aware of health issues and genetic disorders, so while our other children have tested negative, genetically, for Marfan syndrome, we are nevertheless attuned to their own health issues.
When our second pregnancy ended in miscarriage, we were greatly disappointed at how few people appreciated our mourning. Even many “pro-life” people, including our physician and a priest, said to us in our grief, that it was “just a blighted ovum” or “just some tissue.”
Where is the compassion, the love, the humanity in a culture that sees human embryos as mere commodoties? This person sees the embryo as research material to dissect. That person sees the embryo as waste material to be “discarded.” Someone else sees the embryo as a designer baby to be selected.
As a disabled person, I am very concerned about a society which defines “humanity” based not upon a positive objective criterion (such as having a unique DNA sequence and the principle of life) but rather on arbiitrary defintiions of “deprivation”. Shortly after Terri Schiavo was starved to death, I watched a film about a man with Cerebral Palsy who grew up in the early 20th Century. Back then, they called anyone who couldn’t walk a “vegetable.” Name any quality of an embryo that you can claim negates that embryo’s human rights, and I will show you a disabled person lacking the same quality.
I was hugely disappointed 8 years ago when President George W. Bush, elected for his alleged commitment to life, decided to fund embryonic stem cell research. I had wished that he’d merely said, “As a conservative, I believe federal funding of medical research is unconstitutional.” But he didn’t.
For years, people have been spending thousands of dolalrs to travel to countries where the healthcare is not nearly as good as our own but where there is greater freedom of research, in order to receive effective treatments for their conditions from adult stem cell research.
In decades of work, there has been no progress with embryonic stem cells because the very “pluripotency” which makes them allegedly so efficacious actually causes severe side effects, and becaues there are rejection issues.
Meanwhile, doctors have made fantastic progress by treating people with their own stem cells.
Please do not use taxpayers’ money to fund what amounts to the biggest “snake oil” sale in history. Why spend billions of taxpayer dollars just so ethically challenged researchers can indulge themselves in research they know has little potential, just so they can live off the government money?
Please, rather, put the emphasis on proven methods of adult stem cell research. Give my daughter and me the potential of a cure we can use in good conscience.

Sincerely, John C. Hathaway