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savior siblings

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Giselle Laureano

on 10 January 2014

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Transcript of savior siblings

savior siblings

"savior siblings have long been the subject of ardent scientific debate. Scientists explain, “A savior sibling is a child born through in vitro fertilization to provide an organ or cell transplant to a sibling that is affected with a fatal disease, such as cancer or Fanconi anemia, that can best be treated by hematopoietic stem cell transplantation(usually derived from bone marrow, peripheral blood, or umbilical cord blood)*”


What is the procedure for creating a savior sibling?
Designer baby or sibling savior?
Savior Sibling Cases
Emotions
Can savior siblings be emotionally/ psychologically damaged?


Savior Siblings:


Molly Nash
Molly Nash was born with a severe type of Fanconi anemia, a blood disorder that almost always results in leukemia by the age of 10. It's rare, but far more common among people of Eastern European Jewish descent like the Nashes, who live in Englewood, Colorado.
The Nash family did not know that they each carried the gene until Molly had been born.
The only treatment to the blood disorder is a bone marrow transplant. However, the only high chance of having the transplant successful is when there is another sibling who can donate it with the genetically identical tissue called HLA.
They could use in-vitro fertilization (IVF) to produce several embryos, then genetically test all of them for both Fanconi anemia and HLA type. If the genetic dice rolled in their favor, they would choose the healthy embryo and have a healthy baby so they could use the infant's umbilical cord blood as a source of new bone marrow for Molly.
Later, Adam was born and six weeks later, Molly received the Transplant and her life was saved, having Adam as a savior sibling.

Imagine that your child has been diagnosed with a severe medical condition which could potentially kill them. However, the doctors inform you of a procedure that could potentially save your child's life. This procedure involves genetically modifying a child that you will conceive . This child will be a perfect cell and blood match to your ill child and will ultimately save it. Is it ethical to modify your child through in vitro fertilization in order to give birth to a “savior sibling”?

Savior siblings are affected emotionally and physically because children may believe they were only born to save their other “more important” sibling. However, other savior siblings may develop a positive reaction to saving their sibling's life such as Jamie Whitaker.
Jamie says that although he saved Charlie's life, he "does not feel like a super hero".
Jamie was aware that he was born to save his brother, Charlie and Jamie have a strong brotherly bond and love each other dearly.
Is it ethical for doctors not to formally suggest to parents the option of a savior sibling?


- In reality, doctors are only allowed to informally suggest the option to parents due to possible violations of bioethics. Doctors are not allowed to decide what to do in this case, only the parents must make a decision to do the process to save their child.
- Also, in some countries such as the UKonly allows embryo selection to prevent giving , birth to a baby with a genetic disease but does not allow embryo selection to save the life of another child.
Reasons for having a savior sibling
Parent’s reasoning for having a savior sibling:
- You are not an exact tissue match for the child, and therefore you cannot donate blood or bone marrow in order to save the child.
-Your child, having just started their life can potentially die due to the illness.
-Parents may think it’s ethical to have a savior sibling because they’re saving their other child and giving birth to another. Their newborn “savior baby” will be perfectly healthy and may bring their sibling to health too.
-
Morality within science/ Ethical Judgments/ oppositions to the process.
- Morality within natural science is enforced by social and cultural taboos against certain types of procedures and research.
-Possible physical harm to savior sibling

Countries That Do Not Allow Embryo Selection To Save Another Child
Legal Perspective
While this
technology is a great accomplishment in curing children of illnesses, it does bring with it some legal and ethical concerns. Such concerns include respecting the autonomy of a child. Also, ensuring children are not
seen simply seen as bodies from which organs can be taken from and understanding the psychological impacts that being a savior sibling could bring.
In many countries, pre-implantation genetic diagnosis is not allowed at all, as well as religious groups such as Catholics.
Emotional Effects on Parents and the Sibling that was Saved
PGD is not allowed in:
Chile
Switzerland
China
the Ivory Coast
the Philippines
Algeria
Ireland
Austria
Countries That Accept Embryo Selection
-Stress

-Fear of dying

-Sadness on behalf of parents

-Happiness at surviving


Here are countries that do permit the process and idea of selecting embryos
Spain
France
Sweden
the UK (accepts SOME cases)
the USA
Norway
Denmark
Australia
Germany (did not accept or agree to the idea of embryo selecting until 2011)
What exactly is a savior sibling?

Medical Advancements

savior siblings gone wrong
Thirteen- year-old Jordan Flynn needed a bone marrow transplant due to Fanconi Anemia. Her mother, Doreen, decided to genetically modify a savior sibling in order to create a perfect match for Jordan. However, Doreen gave birth to twins both with Fanconi Anemia.All three girls are now ill and in need of transplants.
IVF :in vitro fertilization
Slippery slope argument


Allowing the selection of saviour siblings isn’t morally different from allowing people to choose “designer” characteristics (eye colour, hair colour).

Therefore,if we ban one, we should ban the other. Conversely, if we allow one, we should allow the other.

PGD:Preimplantation genetic diagnosis
IVF with preimplantation genetic testingusually costs $17,000 - $22,000
religious opposition:

In 1987,the Vatican issued an official statement opposing IVF.
Although nowadays, IVF is a very accepted procedure, many feel that PGD
takes it too far.
Many feel that it is "playing God" and is unnatural. Lobbying against savior siblings is supported by the claims that we as humans have no right to challenge nature and God.
The PGD process requires creating many zygotes and inseminating only the healthiest one; this is often compared to abortion.

emotion: this results in fear and guilt.
"Select a baby's health, not eye color
Clinics offering to create designer babies may turn people against a procedure that can save lives."**



*

**
http://www.latimes.com/news/opinion/la-oe-mgoldberg17-2009feb17,0,4961266.story#axzz2pqDQk7Rv
euphemisms
"designer baby"
"test tube baby"
"Made-to-Order Savior"
emotions caused
Economics:
Although the process of IVF and PDG can be a bit pricy, it reduces costs for families in the long run. They are able to save the money that would otherwise be used on chemotherapy, transplants and the possible rejection that comes with it.
We cannot limit scientific research according to our morals because there is no set values with which to compare the righteousness of ours to.
what about a different perspective?
Opposition
Support
Possible emotional and
psychological effect on savior siblings:

Parent's Reasoning
Many people use embryo screening to choose the gender of their child, so why not use it
to save their child's life.
- stem cells are taken from the umbilical cord, so no harm is done.
- perhaps the couple had planned to have another child and now has the opportunity to
benefit from both their children being healthy.
-It is much safer to invest in medical procedures when the affected child has an exact match .
http://link.springer.com/article/10.1007%2Fs11673-007-9034-9
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