December 2008 Archives

The document is addressed "to the Catholic faithful and to all who seek the truth". It's always a good sign when someone who is seeking the truth clearly reveals not knowing what to do with some of the evidence. The attack or I should say instructive is authored by a group of senior un-married white priests that seem to be trying to tell women what God intends for their body and how families should plan for themselves. They say that "cryopreservation of oocytes for the purpose of being used in artificial procreation is to be considered morally unacceptable". What about cryopreservation of sperm? And/or gender selection using male sperm? Is that acceptable?

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Sounds like the same reactions towards Galileo in 1616 when their evidence showed that "the world is firmly established, it cannot be moved". What I like about the document is that it will most likely create controversy that will enhance peoples interest, that will bring more resources and that will accelerate scientific discoveries. Are they doing it on purpose? They must be... Many people will want to know the truth and will most likely support stem cell research. I can speak for families like mine that face life threatening decisions and depend on world changing biomedical research.

A group of cells as beautiful as they may look (only through the lens of a microscope) are not a person and do not deserve the same dignity proper to a person. 

I disagree with most of the document (and I was raised Catholic); I see things differently and I'm glad I didn't follow the "instructive". According to this document, in the eyes of the Catholic Church, the options that Paulina and I decided to take to cure our son Andy, and to find our daughter Sofía, were "deplorable", "incompatible with human dignity", "lacking humanity" and "illicit".

Now what? How do I fix this? Am I excommunicated?

I'm just trying to find the best way to explain this to Andy & Sofia.

The only thing that can't be done is to ignore this type of medical science because it will change things, it will push the human race forward. 

I agree when the document defines medical science as "service to human fragility aimed at the cure of disease, the relief of suffering and the equitable extension of necessary care to all people". They fail to mention that if medical science offers the option to treat disease and relief suffering, it's "deplorable" and "illicit" to block its path, specially when the pain and suffering affects children.

I also agree with the document when they say that "life will triumph", and in our case it did!

The document says: "The embryonic human body develops progressively according to a well-defined program with its proper finality, as is apparent in the birth of every baby". In our case the embryonic cells 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. It took us 580 days to find out exactly what was wrong with Andy thanks to the brilliant minds of medical researchers that know how much Andy was suffering.

It says: "The human embryo has, therefore, from the very beginning, the dignity proper to a person". 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? Consider this analogy: If a building is burning down and twelve small children are inside screaming for help. The building also contains a freezer storing a dozen or so frozen embryos. Which do you save first?

Then it says: .. "the unconditional respect owed to every human being at every moment of his or her existence". That's exactly why we had to do everything we could to save Andy's life.
 
"That there seems to be no morally licit solution regarding the human destiny of the thousands and thousands of frozen embryos which are and remain the subjects of essential rights and should therefore be protected by law as human persons". The morally licit solution is to swap healthy cells for damaged ones to restore health and life and to cure incurable terminal diseases and chronic diseases that affect millions of people.

The document says, "it is never permitted to do something which is intrinsically illicit, not even in view of a good result: the end does not justify the means". It would be interesting for me to ask face to face, the authors of the Dignitas Personae instructive, if they ever had a serious infection. I would ask them to describe how it felt. Did it hurt, was it uncomfortable? Then I would ask them to multiply those feelings by 1,000 times which is the number of days that Andy had to be in the hospital in a constant battle against life threatening infections. I would also be interesting to read their medical records and ask them if receiving vaccines is considered unethical... the end does not justify the means? Or if any of them ever needed a blood transfusion. Is that unethical because they are cells from another human? Or if taking antibiotics is illicit because as the name implies from the Greek αντί - anti, "against" + βιοτικός - biotikos, "fit for life". Taking antibiotics is illicit?

The document says "that the originality of every person is a consequence of the particular relationship that exists between God and a human being from the first moment of his existence and carries with it the obligation to respect the singularity and integrity of each person, even on the biological and genetic levels". So does this mean I had to abandon efforts to save Andy's life because he had this particular relationship with God that was not compatible with life? God wanted him to suffer? I wonder how many times have the authors of the document gone to the doctor this year. Why to they go? God wanted them to be sick?

They fail to give a "morally licit solution to the human destiny of the thousands and thousands of frozen embryos which are and remain the subjects of essential rights and should therefore be protected by law as human persons". The morally licit solution is to move forward with stem cell research and to unleash their healing powers.

They make the strongest argument with preimplantation genetic diagnosis (PGD) saying that it "is directed toward the qualitative selection and consequent destruction of embryos, which consitutues an act of abortion". I disagree with the argument because abortion is the premature termination of pregnancy and PGD does not involve pregnancy. Then it says that PGD "is therefore the expression of a eugenic mentality that 'accepts selective abortion in order to prevent the birth of children affected by various types of anomalies. Such an attitude is shameful and utterly reprehensible, since it presumes to measure the value of a human life only within the parameters of 'normality' and physical well-being, thus opening the way to legitimizing infanticide and euthanasia as well'". The word eugenic is normally referred as pertaining to or causing improvement in the offspring produced. This has to do with disease and disability and nothing else. And I agree that PGD should only be used for life and death situations and not to select particular physical qualities. I think that in our case love was the answer and with Sofia we learned that we can love even more. The only shame I find is that medical science still doesn't know how to adequately treat diseases like NEMO. One out of four of our baby boys would carry the same mutation. Leaving all of the other variables constant: Who would pay the bill of the medical expenses of another boy with NEMO? One thousand days of hospitalization at at least $2.5 k average per day?

Then it says, that "it is forgotten that sick and disabled people are not some separate category of humanity; in fact, sickness and disability are part of the human condition and affect every individual, even when there is no direct experience of it". Sick and disabled people deserve the same type of scientific research that cured Andy. Hope is part of the human condition, and it's that thing inside us that insists. Millions of people with chronic illnesses need hope. belief and desire to the ethical progress of biomedicine.
I'm a siner?

The document "Dignitas Personae" can be found here.

Vatican affirms 'dignity of human embryo'

VATICAN CITY (AFP) -- The Vatican on Friday reopened ethical questions surrounding stem cell research and techniques such as cloning with a document affirming the "dignity of the human embryo."

"Dignitas Personae" (Dignity of the Person), the first "instruction" on reproductive technology in more than 20 years, comes as countries including the United States and France prepare to review policies in the controversial field.

The sweeping instruction lists biomedical techniques considered "illicit" by the Roman Catholic Church such as in vitro fertilisation, cloning, the therapeutic use of stem cells, producing vaccines from embryo cells and the use of the "morning-after" contraceptive pill.

Such practices go against the "fundamental principle" that the dignity of the person must be recognised from conception until natural death, it says.

Issued by the Congregation for the Doctrine of the Faith, the Vatican's doctrinal watchdog, the 33-page instruction updates a 1987 document, "Donum Vitae" (The Gift of Life), which asserted the integrity of the human embryo.

The new instruction virtually enshrines the embryo not only as a human being but also as a whole "person" with all the philosophical and legal consequences that such recognition might entail, according to Bishop Rino Fisichella, secretary of the Congregation for the Doctrine of the Faith.

"The recognition is implicit, but we don't get involved in the philosophical debate," Fisichella said as he presented the document.

The document, approved by Pope Benedict XVI, also reprises the Church's condemnation of in vitro fertilisation, while decrying methods that prevent implantation of the embryo or cause its elimination as "falling within the sin of abortion".

"The blithe acceptance of the enormous number of abortions involved in the process of in vitro fertilisation vividly illustrates how the replacement of the conjugal act by a technical procedure ... leads to a weakening of the respect owed to every human being," the document says.

The text also warns against a "eugenic mentality" arising from advances in genetic engineering, saying: "In the attempt to create a new type of human being, one can recognise an ideological element in which man tries to take the place of his Creator."

Catholics are called to abide by such "instructions," which have had practical consequences across the centuries.

The 1987 instruction, focussing on in vitro fertilisation, was signed by the pope, then Cardinal Joseph Ratzinger, during his 24-year tenure at the head of the Vatican's highest rule-making authority.

It had important consequences for Catholic hospitals around the world as they scrapped programmes to help infertile couples, and it affected funding for certain medical research.

While the techniques condemned by the Church are legal in many countries and widely practised, the new document says Catholic researchers have the duty to distance themselves from a "gravely unjust legal situation and to affirm with clarity the value of human life".

US president-elect Barack Obama, who is to take office on January 20, is expected to act quickly to reverse an executive order by President George W. Bush banning embryonic stem cell research.

Also, French bioethics law is set for review next year.

The Holy See is aware that it is challenging cutting-edge technology, led notably by British embryo researchers, and expects "a variety of reactions," Fisichella said.

"Some will prefer to ignore (the instruction), others will take the easier route of deriding it, and still others will file these pages away as a manifestation of obscurantism blocking progress and free research, but many others will share our concern and our analysis," he said.


I find this ridiculous.

December 4, 2008

Parents Torn Over Fate of Frozen Embryos

For nearly 15 years, Kim and Walt Best have been paying about $200 a year to keep nine embryos stored in a freezer at a fertility clinic at Duke University -- embryos that they no longer need, because they are finished having children but that Ms. Best cannot bear to destroy, donate for research or give away to another couple.

The embryos were created by in vitro fertilization, which gave the Bests a set of twins, now 14 years old.

Although the couple, who live in Brentwood, Tenn., have known for years that they wanted no more children, deciding what to do with the extra embryos has been a dilemma. He would have them discarded; she cannot.

"There is no easy answer," said Ms. Best, a nurse. "I can't look at my twins and not wonder sometimes what the other nine would be like. I will keep them frozen for now. I will search in my heart."

At least 400,000 embryos are frozen at clinics around the country, with more being added every day, and many people who are done having children are finding it harder than they had ever expected to decide the fate of those embryos.

A new survey of 1,020 fertility patients at nine clinics reveals more than a little discontent with the most common options offered by the clinics. The survey, in which Ms. Best took part, is being published on Thursday in the journal Fertility and Sterility.

Among patients who wanted no more children, 53 percent did not want to donate their embryos to other couples, mostly because they did not want someone else bringing up their children, or did not want their own children to worry about encountering an unknown sibling someday.

Forty-three percent did not want the embryos discarded. About 66 percent said they would be likely to donate the embryos for research, but that option was available at only four of the nine clinics in the survey. Twenty percent said they were likely to keep the embryos frozen forever.

Embryos can remain viable for a decade or more if they are frozen properly but not all of them survive when they are thawed.

Smaller numbers of patients wished for solutions that typically are not offered. Among them were holding a small ceremony during the thawing and disposal of the embryos, or having them placed in the woman's body at a time in her cycle when she would probably not become pregnant, so that they would die naturally.

The message from the survey is that patients need more information, earlier in the in vitro process, to let them know that frozen embryos may result and that deciding what to do with them in the future "may be difficult in ways you don't anticipate," said Dr. Anne Drapkin Lyerly, the first author of the study and a bioethicist and associate professor of obstetrics and gynecology at Duke University.

Dr. Lyerly also said discussions about the embryos should be "revisited, and not happen just at the time of embryo freezing, because people's goals and their way of thinking about embryos change as time passes and they go through infertility treatment."

Many couples are so desperate to have a child that when eggs are fertilized in the clinic, they want to create as many embryos as possible, to maximize their chances, Dr. Lyerly said. At that time, the notion that there could be too many embryos may seem unimaginable. (In Italy, fertility clinics are not allowed to create more embryos than can be implanted in the uterus at one time, specifically to avoid the ethical quandary posed by frozen embryos.)

In a previous study by Dr. Lyerly, women expressed wide-ranging views about embryos: one called them "just another laboratory specimen," but another said a freezer full of embryos was "like an orphanage."

Dr. Mark V. Sauer, the director of the Center for Women's Reproductive Care at Columbia University Medical Center in Manhattan, said: "It's a huge issue. And the wife and husband may not be on the same page."

Some people pay storage fees for years and years, Dr. Sauer said. Others stop paying and disappear, leaving the clinic to decide whether to maintain the embryos free or to get rid of them.

"They would rather have you pull the trigger on the embryos," Dr. Sauer said. "It's like, 'I don't want another baby, but I don't have it in me; I have too much guilt to tell you what to do, to have them discarded.' "

A few patients have asked that extra embryos be given to them, and he cooperates, Dr. Sauer said, adding, "I don't know if they take them home and bury them."

Federal and state regulations have made it increasingly difficult for those who want to donate to other couples, requiring that donors come back to the clinic to be screened for infectious diseases, sometimes at their own expense, Dr. Sauer said.

"It's partly reflected in the attitude of the clinics," he said, explaining that he does not even suggest that people give embryos to other couples anymore, whereas 10 years ago many patients did donate.

Ms. Best said her nine embryos "have the potential to become beautiful people."

The thought of giving them up for research "conjures all sorts of horrors, from Frankenstein to the Holocaust," she said, adding that destroying them would be preferable.

Her teenage daughter favors letting another couple adopt the embryos, but, Ms. Best said, she would worry too much about "what kind of parents they were with, what kind of life they had."

Another survey participant, Lynnelle Fowler McDonald, a case manager for a nonprofit social service agency in Durham, N.C., has one embryo frozen at Duke, all that is left of three failed efforts at the fertility clinic.

Given the physical and emotional stress, and the expense of in vitro fertilization, Ms. McDonald said she did not know whether she and her husband could go through it again. But to get rid of that last embryo would be final; it would mean they were giving up.

"There is still, in the back of my mind, this hope," she said.

At the Genetics and IVF Institute in Fairfax, Va., Andrew Dorfmann, the chief embryologist, said many patients were genuinely torn about what to do with extra embryos, and that a few had asked to be present to say a prayer when their embryos were thawed and destroyed.

Jacqueline Betancourt, a marketing analyst with a software company who took part in the survey, said she and her husband donated their embryos at Duke "to science, whatever that means." It was important to them that the embryos were not just going to be discarded without any use being made of them.

Ms. Betancourt, who has two sons, said: "We didn't ask many questions. We were just comfortable with the idea that they weren't going to be destroyed. We didn't see the point in destroying something that could be useful to science, to other people, to helping other people."

Ms. Betancourt said she wished there had been more discussion about the extra embryos early in the process. If she had known more, she said, she might have considered creating fewer embryos in the first place.


Link
If it's a boy:

Ohno Treviño

If it's a girl:

Ohyes Treviño


This is Sofia's favorite song: I'm Yours - Jason Mraz Jason Mraz - We Sing. We Dance. We Steal Things - I'm Yours

This is Andy's favorite song: Burnin' up - Jason Bros. Jonas Brothers - Burnin' Up - Single - Burnin' Up

(Ally Donnelly, NECN: Boston, MA) - A Boston hospital has received a grant to establish the world's first-ever center to study orphan diseases. An orphan disease is any disease or disorder affecting less than 200,000 people in the United States.

Because the disorders affect so few, researchers have a difficult time getting government or private funding. But as one Massachusetts family knows -- research can make the difference...between life and death

Andy Trevino just wants to play air hockey. Being dragged back to this hospital playroom and having a camera stuck in his face is not making things easier.

It's understandable that he's a little shy. The 8-year-old Sudbury, Massachusetts boy has had all the extra attention he needs in his young, tumultuous life.

Paulina, Mother: Two days after he was born, he got a fever and I thought, well, give him some Tylenol or something and that's it.

Unfortunately that would not be it. Andy -- born in Mexico City -- had a blood infection and would stay in the hospital's ICU for more than two weeks. When his parents finally brought their son home, they were not out of the woods.

Andres, Father: First it was a stomach infection then a central nervous system infection also known as meningitis, then he had pneumonia...

His infections were life threatening. Mexican doctors ran every test they could think of... But again and again they came up empty.

Paulina: It hurts a lot to see nurses and people poking at him all the time and watching him crying...

Andres: They were telling us that he had bad luck and we didn't take that for an answer.

The Trevino's had spent 375 days in the hospital in Mexico. Their money was dwindling, but not their hope. They had heard that Boston was the best -- so they came here, to Children's Hospital -- desperate for a medical miracle.

The moment we stepped into the ER, it felt safe.

The Trevino's met with a team of doctors and researchers at the renowned teaching hospital, which immediately went to work. The team soon discovered that Andy had a rare congenital disease. A glitch on one of his genes -- known as Nemo -- wasn't allowing his immune system to battle infection.

Alan Beggs, Children's Hospital: Because they had seen a large number of patients with an immune deficiency, they were able to predict what his defect might be and identify it for his family.

The family had few options. They could make Andy comfortable with medication, knowing his disease was terminal. They could get a transplant to replace his immune system or they could try and replace Andy's faulty cells with healthy cells from a new donor.

Unfortunately, they couldn't find a match trough the public donor registry for an immune system transplant and to replace Andy's unhealthy cells, they'd need a perfect donor -- like a sibling -- and Andy was an only child.

Andres: She was born March 14, 2004.

Though they knew some people would question their ethics, the Trevino's --- who had always planned on more children -- had Andy's sister -- and savior --- Sofia.

Andres: The first sound I heard when she cried were just the most incredible sound I've ever heard.

Children's doctors were able to take Sofia's bone marrow cells and infuse them into Andy's. Her healthy cells replaced his bad cells and his immune system rebuilt itself.

Andres: To see that he's cured, it's just...incredible.

Andy had what is known as an orphan disease -- a disease that affects less than 200-thousand people in the United States.

Beggs: In fact there may be only a few hundred patients or only a few 10s of patients with any particular disease, so it takes a center that sees a number of these things to bring these cases together.

Alan Beggs runs the new Manton center for orphan disease research. Established with a recent 25 million dollar gift to the hospital, it creates a dream team of researchers to work collaboratively.

The hope is that findings in the lab can translate into treatments in the field. Treatments not only for orphan diseases -- which are historically under funded, but a wide spectrum of conditions from cancer to Parkinson's. Take for example the stem cell researcher who has made significant advances in his own field.

He can create cells that could regenerate muscle for some of my patients or maybe regenerate nerves for some of the neurology patients and so on.

When the Trevino's came to children's in 2001, there was no Manton center, but they say their support will never waiver.

Andres: once they learn about it, they take it to the clinic and once they take it to the clinic they help more children and at the end of the day they save more lives.

More lives....like Andy's. He is now a thriving third grader who loves nothing more than playing with his best friend....his sister.

Hi, guys. Thank you for spending so much time with us yesterday and for sharing your story. I hope it helps raise money for the Manton Center and for other kids like Andy. The piece will air for the first time on NECN tonight during the 9pm news. It will repeat at 10pm and again on the news at noon and 1pm tomorrow. About 20-30 minutes after it airs on television, it will be available on the web. NECN.com. If you don't see it on the landing page, scroll down about half way and look on the right hand side for the grey section of the search bar and plug in Ally Donnelly. My recent stories will pop up and you should see Andy and Sofia. Ally

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ALLY DONNELLY Ally Donnelly is a two time Emmy, two time Gabriel, Edward R. Murrow, Associated Press and Freddie Award-winning journalist. She covers health and science issues for NECN and is the featured reporter on Health Week with Karen Swensen. On Fridays, Ally also anchors News Day Live with Chet Curtis as well as Worcester News Tonight. A native of Chicago, Ally moved to Boston after earning her degree in journalism from Marquette University. She began her career as a Public Affairs Officer for Children's Hospital, Boston. She later moved up the ranks to become editor of WHERE Boston Magazine. Ally's television career launched at WPRI in Providence, RI. She began working for NECN as a freelance reporter in 1999 and joined the news station full time in 2004. In addition to medical issues, she has covered everything from the Rhode Island nightclub fire to the Catholic Church sexual abuse crisis to the Big Dig Tunnel collapse. Ally and her husband Patrick live on the South Shore of Boston.