Embryonic Stem Cell Controversy

BETTY ROLLIN, correspondent: Andy Trevino took to his new baby sister, Sophia, from the start, and in more ways than one, she took to him. One of the reasons Sophia was conceived was to save her brother’s life. Shortly after Andy’s birth, he got sick—very sick. His immune system just didn’t seem to be working.

ANDRES TREVINO: He started having very rare infections—infections of his central nervous system, infections of his stomach, infections of his lungs.

ROLLIN: The Trevinos were desperate for a diagnosis, which they weren’t able to get in Mexico City where they lived. They wound up at the Children’s Hospital in Boston and learned that Andy had a rare genetic mutation called NEMO that was causing his immune system to fail.

TREVINO: We decided to keep him safe with antibiotics and a lot of medicines, about 13 types of medications, and then to try to find a compatible donor for a bone marrow stem cell transplant.

ROLLIN: But they couldn’t find one.

TREVINO: One day one of the physicians came to our hospital room and told us there is always the option of having another baby, and after birth we could use the umbilical cord stem cells for Andy.

ROLLIN: And that’s what you did.

TREVINO: That’s what we did.

PAULINA TREVINO: It wasn’t difficult for me to take this decision because we always wanted another child, and to know that this other child was going to be able to save my son’s life, it was exciting.

ROLLIN: IVF, in vitro fertilization, was the only way to create an embryo that would be free of the genetic mutation that Paulina carried. It took 36 embryos to get a big enough selection to achieve success.

DR. GEORGE DALEY (Children’s Hospital Boston): There was no way to cure Andy without the decision of the family to have another child whose cells matched Andy’s, and indeed by performing in vitro fertilization and selecting for the tissue type, they were able to have a child whose bone marrow could cure Andy.

ROLLIN: And now Andy is well, and he has two sisters, Sophia and most recently nine-month-old Tania. The family lives outside of Boston, where Andres has a job with Children’s Hospital. The Trevinos are Catholic. The Catholic Church believes that life begins at conception, that creating embryos through in vitro fertilization, which is what the Trevinos did, is wrong.

Richard Doerflinger with the US Conference of Catholic Bishops believes that each embryo deserves respect.

RICHARD DOERFLINGER (US Conference of Catholic Bishops): We are talking here about life, about a human life at a very, very early and undeveloped stage, but human life nonetheless.

ROLLIN: Dr. Daley disputes that an embryo in this stage is a human life.

DR. DALEY: We are talking about the first three or four days after conception when the human embryo is a tiny ball of cells, between 50 and 200 cells. It’s a speck smaller than a period at the end of a sentence. You need a microscope to see it.

ROLLIN: The church also believes the destruction of embryos to obtain embryonic stem cells for research is immoral.

DOERFLINGER: When we are talking about stem cell research, we are talking about a way to destroy that life, cut it off at a certain stage for the benefit for others. We think that’s wrong to do that.

ROLLIN: But Louis Guenin, professor of ethics at Harvard Medical School, says that the research is not only not wrong, it would be wrong not to do it.

LOUIS GUENIN (Harvard Medical School): It’s a biological fact that those embryos outside of a womb can’t mature beyond about two weeks. Knowing that, we have to take account for moral purposes of the duty of beneficence, the duty to come to the aid of those who suffer if we can do so without unreasonable burden.

ROLLIN: In a document called “Dignitas Personae,” issued by the Vatican in 2008, the church reiterated its existing ban on IVF and on the destruction of embryos for stem cell research, which is not to say that there are not individual Catholics like the Trevinos who choose not to follow the church’s teachings.

DR. DALEY: Stem cells are part of what we call regenerative medicine, because stem cells are involved in the natural repair and regeneration of our tissues. They teach us an enormous amount about the disease process, but they give us this possibility for regenerating tissues, and that’s why they are of such tremendous scientific importance, but also potential medical value in the future.

ROLLIN: Because of that, the Trevinos decided to donate their remaining embryos to Dr. Daley’s lab.

TREVINO: This decision that we took saved the life of my son. It gave us a beautiful daughter, actually two beautiful daughters, and it allowed us to hopefully help other people with the cells that have been created at the lab.

DR. DALEY: We succeeded in generating two embryonic stem cell lines, one of which carries the precise gene defect that affects Andy. That line is enormously valuable to us.

ROLLIN: But Catholics and others who think the research is immoral favor using adult stem cells. Dr. Daley studies adult stem cells, but believes the use of embryonic stem cells is crucial.

DR. DALEY: If we want to understand the earliest stages of human development, how we lay down all the different tissues, then we are best to study these early embryonic or pluripotent stem cells.

ROLLIN: Now that the Obama administration has allowed federal funding for embryonic stem cell research, there are many more stem cell lines available. But scientists are still barred from using embryos to create new stem cell lines with federal funding.

DR. DALEY: And there’s a pipeline of hundreds of lines waiting for approval. So the policy is in place, but it’s going to take months, maybe a year or more, to implement it. So there’s still a certain delay and frustration.

ROLLIN: As long as some people believe that an early-stage embryo is a human being, the moral battle over embryonic stem cell research will continue. Meanwhile, Andy Trevino has benefited from stem cell therapy, and others with his disease will benefit from the stem cell lines donated by his parents.

For Religion & Ethics NewsWeekly, I’m Betty Rollin in Sudbury, Massachusetts.

  • Don Johnson

    It would seem that Dr. Guenin is saying if an unborn child cannot survive outside the womb then he/she is not a “life.” If I understand his position correctly, this puts any person who is dependent upon another for life at risk. There is certainly not scientific question when life begins. It is a biological fact that life begins at conception. The question for Dr. Guenin seems to be, “At what point do you value or protect that life?”

    There are certainly many important and difficult matters to work through in seeking to address the complex array of medical and ethical issues, especially when there are multiple lives in view – the unborn child, the child, youth, or adult who may lose his/her life without a particular treatment, etc. But we do no one any favors by dismissively saying the size of a person or the dependence of that person upon another for viability suddenly constitutes “non-life” – often renamed “embryo” or “tissue” or “cells.”

    Face the biological facts. Human life begins at conception. Then, with all due respect, assess the circumstance and make the difficult decisions. Renaming and redefining human life is a simplistic short-cut to disaster for the unborn and for any who are dependent upon another – the weak, the vulnerable, the tired, the poor, the huddled masses …

  • michael church

    I am especially compelled to write after viewing the Trevino’s story. I too believe that life begins at conception, whether that conception takes place in a petrie dish or in a woman’s womb. I believe that God is the creator of life and value the scriptures but I disagree with the Catholic Church’s position on IVF. I realize too this is a complex issue and that many people are either misinformed or don’t understand. After conventional means, an egg is fertilized within the womb and sometimes rejected for various reasons resulting in spontaneous abortion, miscarriage or other abnormality. What makes fertilized eggs (embryos) done so in a lab any different? So long as they are treated respectfully and implanted in a woman’s womb for normal birth. I think what the Trevino’s did was courageous and heartwarming. In the end, they gave the remaining embryos for science which would normally be discarded after years of being frozen deeming them unused according to scientists. Where is the dignity in that. Millions of frozen embryos are tossed out in medical waste every year. Why not give them a second chance to help another life through science. Jesus said, it is right to lay down your life for your brother.

  • jeff malka

    Jeff,

    Cheers to Drs. Daly and Guenin at Harvard. I didn’t know impediments still exist to the creation of new stem cell lines. Most unfortunate national science policy continues to be shaped by opinion of the uninformed. My father always says….persecution of Galileo by the Church stifled science and innovation in Italy for centuries.

    Donna

  • Marcy Darnovsky

    For those of us who support embryonic stem cell research, there’s an important issue here that’s not mentioned. The Trevinos’ story is heart-rending. What an agonizing situation for parents. But creating a child in order for her to provide tissues that must be extracted via a medical procedure raises concerns about her well-being. Let’s hope that the Trevinos and others in their situation never have to face decisions about procedures (a liver biopsy? a kidney donation?) that would be more risky than a bone marrow extraction.

  • Andres Trevino

    Marcy,

    Two things:

    1) Thanks to research done by Dr. Zon at the stem cell research program at Children’s Hospital Boston, there’s now a drug called prostaglandin that may improve HSC Therapies. So if cells from the umbilical cord are not enough for transplantation (like in our case) this drug helps. It was difficult for us to have Sofia donate bone marrow stem cells when she was 7 months old. We felt confident because it was done by incredibly skilled hands at Children’s Hospital Boston. She was dancing in her crib after the procedure! Andy received umbilical + bone marrow stem cells.

    2) Liver biopsy and/or kidney donation from savior sibling: My response is no. That’s why we need to support Dr. Daley’s research. That’s why we support research at Children’s Hospital Boston.
    We’re hoping that Dr. Daley is able to unleash the healing powers of stem cells to be able to swap damaged cells with healthy ones!

  • MEL

    Doctors are hanging on to this “sacrificial human embryo” stem cell technology out of greed and laziness. It is immoral. Many years of research resulted in failure after failure compared to adult stem cell research success. Which proves that there IS a better way to save lives.

    Why cover this story when there is SO MUCH MORE SUCCESS with adult stem cells? 36 HUMAN LIVES LOST to save one child–assuming that the child really had an absolute death sentence and no other treatments available. How many of these human lives being sacrificed have the magnificent genetic makeup of a brilliant biochemist or surgeon?

    I donated my sons umbilical cords in the late 1980s for early stem cell research. I never sacrificed the lives of any conceived, unborn children for destruction in order to “save lives”. Why, after more than 20 years of research in this area, must a couple sacrifice their conceived, unborn children to “save” one of their children’s lives? Umbilical cords are donated everyday in hospitals throughout the US, and the stem cells are used on other people without rejection. There has been success in using skin cells and other cells from adult donors within families as well.

    I truly doubt the integrity of this doctor and the “facts” of this case reported here.

  • Karen Torres

    first of all i am a senior at Wheat Ridge High School and i am doing my senior project on stem cell research, i will not go into specifics about that. But i found this very interesting…yes there is many oppositions on stem cell research, but i think it is because people are not well educated about this topic. When you ask people if they agree or disagree and the reason behind it, many say that because you kill life. But there are other possible ways of obtaining the cells; For example, the umbilical cord. I believe that if we truly believe in stem cell research and believe that it will lead to marvelous outcomes, that we should do something about it. Maybe like going out in public and trying to teach our people what stem cell research really is. But in a bigger way, so that our voices may be heard. please people if you are passionate about this topic, help me plan a way to educate society so that they have a true meaning to their opinion. please if you do e-mail me kjunuem@hotmail.com
    one more thing Michael Church i thought your quote about jesus “It is right to lay down your life for your brother”
    and i want to include it in my presentation to get the attention needed form my peers. if you could please tell me where in the bible that says it would be very helpful

  • Charles

    Karen, just one thing to think about before using the quote. It is one thing to lay down one’s own life for someone else. It is quite another thing to lay down (i.e. destroy) someone else’s life for that purpose. There are very different moral issues in play.

  • Andres Trevino

    Mel:

    Happy to share more facts.

    48 hours after birth my son developed his first life threatening infection.
    Time to find diagnosis: 1 year and 1/2
    Diagnosis: primary immune deficiency – mutation of NEMO gene (4th exon).
    NEMO incidence: 1 in 250,000
    Cases known: 72 cases (half are alive)
    Types of infections: blood, central nervous system (meningitis), skin, eyes, ear, bone (right index finger), lungs (pneunonia), diarrhea.
    Number of doctors & specialists: + 150
    Number of nurses: + 350
    Doctor who helped us find his diagnosis: Jordan Orange, MD.
    Times in the OR: 30
    Times in the ICU: 2
    Hospital days & nights: nearly 1,000 in 5 years.
    Times he smiled: Almost daily, specially during x-rays.
    IVF cycles: 5

    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 than 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 relieve 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.

  • Tom Coldwell

    Th ethics of journalism are fuzzy. You talked with Fichare Dodrflinger for an hour, butm used his commentrsefore giving him a chance to view how is contribution was sued. The position of the Catholic church is that since an embryo is a cdeveloping uman peron, he/she has a rght to life equal to the rest of thnis. VBe.liefd in her humaith is not just a belief. Dr. Guenin disagrees. Dr. Daily did no agrfee directly, but delaired ther was no itrinsic value at this stage other than for medical or research ppuposes. This is basically utliitaianism.

    The impression was that folks like Richard and I aree pretty ingorant. As long as there are others likewise misinformed, progress will be difficult. This not considering the large amoount of succssful trherapy with adult stem cells; which was how the final cure inyur pieced was obtained. Not considering that therhas been zero success with embryonic cells and the withxrawl of approval or the only trial bvecause of tumors in the exerimental animals.

    Before more presentatrions on ths topic, reade Embryo (A Defense of Human Life) by Rovert . George and Christopher Tolleffson.

    inally when youthik aboutmit, the statement that not all atholics follow agree on the basics of the teaching on this is irrlvant; a cheap shot.

    Tom coldwell

  • Peter913

    Embryonic stem cell:
    We are talking about a human life at its very early stage; but human life nonetheless.

    I believe life begins at conception, that creating embryos through in-vitro fertilization is wrong.

    Stem cells can be harvested from many parts of our body including umbilical cords.

    We don’t have to kill a human being to save another.

    Now, if we just planted the embryonic stem cell in say a 50 ish woman’s womb …… Wa-La, 9 months later the baby will appear and say 55 years later be a journalist.

    Just saying!

  • Dennis S

    Has anyone else seen a common phrase in all of this when defining when a life begins? The words “I believe” There is never going to be a right or wrong answer to this question if people keep throwing around terms like “I believe”. Awesome, good for you. You believe something. That does not simply make it true. And I’ve also noticed that no one else has gone through anything remotely close to what the Trevino’s have. You have absolutely no room to speak as far as whether or not their decision was right or wrong, nor are half of you scientifically qualified to make any substantial claims on the success of failure of embryonic stem cell research. And one more thing: to all of you who claim a religious backing for your opposition to embryonic stem cell research, I’m sure there are many other aspects of our society that deserve your negative attention. How many of you can honestly say that you live your life, quote for quote, from the bible. None of you. So before you criticize these people for “destroying” human life, maybe you should first take a good look at your own personal lives, and then actually think about the fact that not only did they save the life of their son, Andy, but they also now have two more children, free of the disease. If anything, this is an amazing and beneficial story to everyone. And who knows, maybe your child will need the use of the exact same technology in the future. I’d like to see you make the decision to let your child suffer while a solution that poses no direct threat to anyone else exists, and not take advantage of it.

    And as far as the use of adult stem cells goes, a comment was made that the Trevino’s had to use both umbilical and adult stem cells after all. Yes, they did. But if you weren’t so blinded by whatever notion it is that you believe made their decision wrong, you would have realized that they had been searching for a compatible bone marrow donor and could not find one.

  • Amy

    “The development of a human being begins with fertilization, a process by which two highly specialized cells, the spermatozoon from the male and the oocyte from the female, unite to give rise to a new organism, the zygote.”
    [Langman, Jan. Medical Embryology. 3rd edition. Baltimore: Williams and Wilkins, 1975, p. 3]

    There is no more pivotal moment in the subsequent growth and development of a human being than when 23 chromosomes of the father join with 23 chromosomes of the mother to form a unique, 46-chromosomed individual, with a gender, who had previously simply not existed.
    -Fritz Baumgartner, MD
    scientist, physician, surgeon.

    Human Life begins at conception.. it’s not a beleif.. it’s a fact.

  • Mary

    Did anyone notice that the cells actually used to help this child were adult (from the umbilical cord) and not embryonic? So why are the doctors pushing embryonic stem cell research?

  • Felicia

    Obviously there are very strong views on the nature of Embryonic Stem Cell Research and I believe that there should be. I can understand both points of view, the perspective that it is killing a human life for scientific research and the perspective that without doing so, we could be missing out on some vital medical break through`s that could save millions of lives in the future. We as humans have no right to judge other people for the decisions that they make under their circumstances. The Trevinos made the best decision that was available to them and their children. In the Trevinos case, if they would not have used Stem Cells, their son would have died. My question to the individuals who believe that Embryonic Stem Cells should not be used because it is killing a human life is, what does that make us as a human race to sit back and ley an innocent child die of a genetic disease when we can cure him of his ailments?…

    When it comes to when a life is formed, the religious belief is that it is created the moment the sperm and egg meet. According to science, it is when the heart and brain form. Amy, I can understand why you used the quotes that you did but unfortunately it was not complete. For what I understand that to mean is that when the fetus has a sex ( either male or female ) then it would be considered a human life. The part that was missing from your post is that the zygote does not have a specific sex at conception. The sex organs are undifferentiated until after 40 days in the womb when the sex organs start to take the form of either male or female genitalia. That is scientifically proven. Now, I`m not trying to prove you wrong in your beliefs I simply want to make sure that you are informed of this information before you make your own opinion.

    As we can tell, this is a very touchy subject for millions of people across the globe. Every individual is entitled to their own opinion and beliefs to be for or against the use of Stem Cells. It would be more beneficial to humanity to try to understand each view and try to meet in the middle with an agreement. Calling names and degrading individuals is not going to get this topic to disappear and its not going to get your point across, all it is going to do it prevent people from taking your point of view seriously.

  • Sassy

    Well said!

  • Chris Lennon

    “Before I formed you in the womb I knew you”
    Jeremiah 1:5

    I could not leave this site without commenting.

    When Christ hung dying on the cross and said “Father forgive them for they know not what they do” he was praying for all who would never have enough faith to believe Jeremiah 1:5.

    May the peace and love of Christ touch at least one reader’s hardened heart. Amen.