Saviour Siblings

Tabassum07

Smile for Allah
:salam2:

I came across this new concept today - Saviour Siblings. Children born because the parents want to use the stem cells in this new healthy baby to treat their already sick children.

http://www.france24.com/en/20110208...nology-stem-cell-research-clamart-umut-fryman
France's first 'saviour sibling' stirs ethical debate about biotechnology

The country’s first "saviour sibling", a healthy boy whose discarded umbilical cord will help heal one of his two siblings from a genetic blood disease, has brought complicated ethical issues over biotechnology to the forefront in France.

France’s first so-called "saviour sibling" was born in a hospital in the Parisian suburb of Clamart in late January, doctors announced Tuesday. The baby, whose blood stem cells will help cure one of his siblings from a severe genetic blood disease, has also opened a new front in the bioethics debate in France.

Born to parents of Turkish origin and named Umut Talha (Turkish for "our hope"), the child was conceived under circumstances that would have been unthinkable only a generation ago.

Umut Talha’s parents approached the hospital in Clamart a little more than a year ago with a serious problem: their two young children were both afflicted with an inherited blood disorder, Beta thalassemia, which requires monthly blood transfusions. The parents knew the hospital was one of only three in France that was developing a treatment for their children's illness.

An embryo was screened and genetically selected from an original group of 12 embryos. It was picked to ensure it did not carry the gene for Beta thalassemia, but also based on its compatibility with the sick siblings. Besides selecting an offspring that would be spared from the disorder, the parents hoped the future baby would also become a donor of the right kind of treatment cells.

In the end the boy was born disorder-free, and his cells were confirmed to be compatible with his older sister, now aged two. Doctors feel confident that Umut’s sister will be cured with the cells from his discarded umbilical cord, and her monthly blood transfusions will be discontinued.

The family have since returned to their home in southern France, but they plan to return to Clamart to undergo the same procedure to cure their other child, Umut’s four-year-old brother.

Hopes and hurdles

French newspapers spread “medicine baby” across headlines on Tuesday. But speaking at a press conference René Frydman, a fertility pioneer and father of the first French test-tube baby, who also oversaw Umut’s case, said he preferred the term “double-hope baby”.

“Medicine baby is a media term invented by people who are against this kind of procedure,” Frydman told reporters. In English-speaking countries, the terms “donor baby” and “saviour sibling” have been widely used in the media.

For Frydman, Umut represents a double hope for his parents: the hope of having a new, healthy baby, and the hope of curing one of their sick children. But other scientists, religious groups and parents beg to differ.


The issue of saviour babies has raised complex ethical debates, and renewed fears of a move towards “designer babies”, or babies whose traits – such as intelligence, eye-colour and height – have been predetermined.

The timing of Umut's birth could be significant. The very law that allows for cases like Umut’s is being revised starting today. Observers say that the existing legislation guiding biotechnology in France may be tightened and restrict research in certain fields, including stem cells.

The country’s standing bioethics law allows for cases like Umut’s. In fact, the government has earmarked 800,000 euros per year for Clamart to practice and develop the procedure.

But Frydman and his colleagues say a lot more needs to be done, complaining of endless hurdles to launch further research and access funds. They regret that France has started a decade after the United States and that the government is still reluctant to give them its full backing.

I also happened to come across a blog post about this, which looks at things from an ethical point of view:

This isn’t the first savior sibling to be born, and so far all the new babies that were created as medicine have also been wanted and loved. But embryos were created and discarded as medical waste if they didn’t meet the genetic screening.

Beyond the embryo issue, I want to look more deeply at this issue. Savior siblings are created specifically as objects, at least to some degree, because they were brought into being for a purely utilitarian purpose. That being so, why should the practice stop with creating savior siblings who are also wanted children? What will happen when, rather than wanting the child, the parents harvest the stem cells and then put the child up for adoption because their family is big enough already? How about sending the embryo to India via Federal Express, having it implanted in a rented uterus, as already occurs, and then after you get the stem cells, just not taking the child home? That already happens, too, if the child doesn’t meet the parents’ expectations. I don’t see any brakes to that.

And what if the family didn’t want the baby to be born at all, but paid a surrogate to gestate and abort after seven months for tissues? Do we even have the lexicon to condemn such a dehumanization anymore, much less prohibit it? Such things may already be happening in the Ukraine, where the BBC reports babies being killed for stem cells and the Daily Mail reported that women were being paid to get pregnant and abort for fetal stem cells to be used in beauty treatments. Hear the crickets?

We enter harrowing ethical paths via hard cases. Vital principles are tossed aside in the emotions of the moment. With this practice gaining speed, regulations need to be fashioned that look at the big picture before we confront difficult situations.

I am not holding my breath. If recent history teaches us anything, Oprah Culture has incapacitated our abilities to set any real limits. Alleviating suffering, which has a very malleable and subjective meaning today, justifies almost anything. We never say, this far and no farther–well, sometimes we do, but we never mean it.

Thoughts? It seems to be a strange science - making designer babies.
 
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