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Friday, September 18, 2009

The moral/ethical dilemma comment posted at Andres Trevino´sThrive post.

The moral/ethical dilemma comment posted at Andres Trevino's Thrive post.

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Comment: Does anyone else see the moral/ethical dilemma of creating and destroying 35 viable human embryos to save 1 human? Even the argument that the two embryonic lines might lead to cures for disease down the road is on shaky ground due to the fact that embryonic stem cell research has yet to produce a single successful treatment. On the other hand, adult stem cells (like those from the umbilical cord blood) don't require destroying human life and have 70+ successful treatments to their names.

Each of the other 35 embryos should have been given a chance to be born, a chance to be given a name, a change to be loved. Not destroyed as if they were simply lab rats. There are organizations that would have taken those embryos and attempted to implant them in mothers who couldn't have children of their own and who would have given them a chance at life. If that one boy's life was worth creating 36 embryos to save his, then isn't each of those babys' life worth giving them a chance to have one instead of being sent off for research.

One day will will look back on the 19th & 20th century's holocaust of destroying viable little humans in the same way we look back on Hitler's holocaust...with sorrow, shame, and a vow: "Never Again".


Response: Thank you for your comment. Yes, many see the moral/ethical dilemma and we did too.

We decided to share our story because we owe it to our three children, to the people that made Andy's cure possible and to others who might find hope and who might benefit from similar forms of research. Medicine is about options and I do not feel obliged to believe that the same force that endowed the discovery of medical treatments has intended us to forgo their use. We know that medicine moves forward by sharing and telling these types of stories.

I'm not a doctor and I'm not a priest, I'm the father of a boy who was born with a hole in his immune system. I live in a practical world of choices and I can speak for families like mine that face life threatening conditions and have to make life changing decisions to find a cure. Our solution relied on finding the genetic roots of the disease and this is what gave us options to cure him.

In our case most of the embryonic cells (blastocyst) had a well-defined genetic mutation inside a gene known as NEMO that causes the immune system to fail; a terminal condition, not compatible with life.

When we learned about the procedure that involved in-vitro fertilization (IVF) and pre-implantation genetic diagnosis (PGD) as an option to find a compatible sibling to use umbilical cord stem cells to cure our son we found out that:

a) not many Latinos are registered as stem cell bone marrow donors.

b) that IVF and PGD don't always involve pregnancy and that many more embryos are created that will ever become children.

For Andy's treatment we needed compatible cells to replace the damaged ones and we faced the moral/ethical dilemma straightforward. We consulted Andy's doctors and 90% of them thought this procedure could work. We consulted our family and friends, the majority are Catholic, some Jewish and some Atheist and all of them had a positive response. We consulted Padre Toño, a Catholic priest who is a friend of the family. He knew about Andy and what he was going through. He gave us a positive response and also contacted some of his friends at the Vatican who also gave a positive response. My father consulted a catholic Archbishop in Mexico that said "When caught between two wrongs, choose the lesser one". We based our decision knowing that the transplant procedure would work and that's why we came to Children's Hospital Boston.

I agree that human embryonic cells are worthy of esteem and respect and shall be handled with dignity and even more than all of the other type of cells inside this planet. I don't believe that human embryonic cells are like a person, if they are, why haven't I seen any microscopes inside a church?

I don't agree with the premise that the single celled zygote should be given the same considerations as living persons. I do not view the embryo as a human being, particularly when it's inside a freezer. For me the 36 embryos were a group of cells that as beautiful as they may look (only through the lens of a microscope) are not a baby.

It's a blastocyst in an early stage of embryonic development before implantation (picture via Wikipedia). And for me the miracle happens when the blastocyst attaches to the wall of the uterus and performs implantation when connections between the mother and the embryo occur and the different cells begin to form, including the umbilical cord. At this stage the embryo cannot survive outside the mother. Science still can't explain that moment during implantation and I don't think it will be able to do so during my lifetime, only God knows what happens.

We decided to donate the embryos that carried the NEMO disease for research because we know the researchers and we're hoping that with those cells they will be able to study the disease and find an easier cure. We felt that it was morally justified to derive benefit from embryos through medical research instead of relegating them to medical waste or to donate them to another couple knowing they carried the disease.

Have you ever had a serious infection? How did you feel? Did it hurt, was it uncomfortable? Multiply those feelings by 1,000 which is the number of days that Andy had to be in the hospital in a constant battle against life threatening infections.

This has to do with disease and disability and nothing else. I think that in our case love and hope gave us the answer. Not all of the embryos had NEMO and not all of them were donated to research. We have been blessed again with the arrival of another baby who is beautiful and healthy, she was born April 15 and we know she doesn't have NEMO.

I don't think that we can say "never again" or ignore this type of medical science because it will change things, it will push the human race forward. If medical science offers the option to treat disease and relief suffering, for me it's deplorable and illicit to block its path, especially when the pain and suffering affects children. Hope is part of the human condition, that thing inside us that insists. In this case as in many more the morally licit solution is to be able to swap healthy cells for damaged ones, to restore health and life and to cure an incurable terminal disease like the one that affected my son. Sick and disabled people deserve the same type of scientific research that cured him. Millions of people with chronic illnesses need hope, belief and desire to the ethical progress of biomedicine.


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