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Background

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Bethany O

on 6 June 2014

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Transcript of Background

SAVIOR SIBLINGS: What's the deal?
Why should Savior Siblings be allowed?
Most families who undergo procedure planning on having child anyways
Benefits conceived child's health and family environment
Ensures that conceived child is free of genetic disease
“It seems incoherent to me to treat a sick, suffering child by bringing new suffering into the world”
Lowers need for abortion
CONS
What is a Savior Sibling?
Pros:
Stakes
“The crucial question is what amount of suffering we can risk inflicting on one person to alleviate the suffering of another person."
Levels of pain to donor limited
Mainly don't remove vital organs from donor
Often use umbilical cord blood; doesn't affect savior sibling
Bone marrow removal causes little discomfort
Eggs that aren't selected for are likely to not be used regardless
Suffering and chance of death of the sick sibling outweighs the slight discomfort of the savior sibling, especially if through this discomfort, a life is saved.

Results
Most reliable way to ensure that sick child receives necessary treatment
Only 15% chance of siblings being HLA identical through natural birth due to small size of most families
Lessens stress on parents
Few to no complications occur as a result of PGD
Reduces need for abortion since child is a definite match

CONS: Position Statement
Savior Sibling
= A child born in order to provide an organ or cell to a sibling with a fatal disease
Preimplantation genetic diagnosis
(PGD) is used to ensure genetic compatibility - it is the screening of an embryo for genetic diseases prior to implantation
Purpose
: sick siblings are in need of a haematopoietic stem cell (HSC) transplantation (bone marrow, umbilical cord) or human leukocyte antigen (HLA) donation
Only zygotes that match with older sibling are implanted via in vitro fertilization
First completed by Yury Verlinsky
Most reliable method of ensuring donor matching
Pros Rebuttal
Cons Rebuttal
Conclusion
WORKS CITED
“‘We are not creating this saviour sibling to be a child in its own right. We have created it - designed it - to be a source of spare parts for an existing child’” (Richard Nicholson, Bulletin of Medical Ethics)
“The [donor] child has the spectre of being born for somebody else’s benefit throughout his whole life.”
The child has a burden of being born for someone else
The savior sibling would doubt their "purpose in life"
Esp. when the child matures and gets older
Life of one child shouldn't be valued more than the life of another
The older sibling could also feel in debt to the younger one
Ex. "I saved your life - you owe me!"
Why was I born?
$
$
$
$
$
$
If the amount of savior siblings increase, there would also be an increase in the number of "discarded" embryos
These embryos, although never fully developed, had a chance at life
Loss of life can occur in
both situations
- even with savior siblings, certain embryos are selected while others are left to die
Adam Nash - first savior sibling in the U.S.
born in 2000 to save his sister Mollie, who was diagnosed with Fanconi's anemia


Better to take chance than relying on unreliable non-familial donor
If already living sibling who was compatible with brother/sister, would most likely be subject to same fate
My Sister's Keeper - brother wants to help sister but isn't compatible
Even if recurrence occurs, allows more time with sibling than would have had otherwise
Purpose of transplants are to prolong life, even if recurrence occurs, still a success
Self-Worth
Life of one sibling is not more important than the life of another
Ill child may undergo psychological issues if knows chances of living could have been improved but weren't
Savior sibling is and will always be apart of family that he/she is born into
Benefits to savior sibling:
Better family environment
Lack of guilt
Gives child a purpose, makes him or her feel important
Lives are very valuable, inreplicable things. If a life is lost, it can never truly be replaced, which is why it is understandable that a family would go to such extremes to save their child.
Even if identical child is born, it is not 100% guaranteed that transplants will work; if it does work, recurrence can still occur
PGD - removing a cell from an in vitro fertilization embryo to test it for specific genetic condition before transferring embryo to uterus
Embryo biopsy usually performed on day 3 embryos
day 3 - makes relatively large hole in shell of embryo
cells must be torn away from each other
embryo loses 1/4-1/2 of its biomass
Human embryos - very sensitive
only 40-50% of fertilized human eggs progress to blastocyst stage
Savior siblings could be used for vital organs
especially kidneys, since you can live without one
Who determines what is right and wrong for parents to do?
What if children ARE used to donate vital organs?
Although "savior siblings" seems like a heroic idea on the outside, there are many consequences to the process - physically and psychologically.
“It seems incoherent to me to treat a sick, suffering child by bringing new suffering into the world”
Technical problems
CONSENT
People argue that savior siblings can be allowed as long as the child gives consent - but in reality, would the child even have any say?
If the child was born solely for his/her sibling, he wouldn't have a choice to abstain from donating
"Adam was chosen,
29 other human lives were not
, simply because their DNA was not able to rescue Mollie from a deadly diagnosis."
Is it worth bringing new life into the world when the savior child has to suffer too? Even though he/she can live without a kidney, it puts the child at a disadvantage
Life is a very precious, valuable, and irreplaceable thing, and the use of savior siblings not only preserves life, but also brings new life into the world.
Recurrence could occur even after the savior siblings donates to his brother/sister
Is it worth bringing in a new child for the chance that the process might not even be successful?
They could have "more time" with the sick sibling, but there is usually inevitable death
We cannot be the ones who determine what is right and wrong for parents to do for the welfare of their child(ren). Cases vary from family to family.
What truly matters is the intention of the parents. Since there is no way to accurately determine the morality of their decision, there is no clear line between what's wrong and what's right.
It is up to each family to determine their limits.
They have a right to privacy, including the decision to use savior siblings.
However, society should not shame or "celebritize" families based on their position on the morality of savior siblings.

Savior siblings - costly consequences, including pricing of the procedure
According to the Advanced Fertility Center of Chicago, the average cost for IVF, embryo biopsy, PGD test = $17,200 + meds
Also, having a child is costly - it is financially taxing to raise a child
The child might have a certain purpose in life, but would he/she agree to it?
Although each case is different, how would you feel if you had been
genetically
born solely for someone else?
Would the family environment really be benefited from savior siblings?
The first case of savior siblings (Adam Nash) - he is not yet a teenager
Teenage years - tend to see more rebellion, defiance
The notion that Adam, for example, was "created" for his sister could cause a family divide in the future
PURPOSE
FAMILY ENVIRONMENT
RECURRENCE
1.)
Devolder, K. (2005, January 17). Preimplantation HLA typing: having children to save our loved ones. Retrieved June 3, 2014, from http://www.academia.edu/178495/Preimplantation_HLA_typing_having_children_to_save_our_loved_ones

2.)
Lahl, J. (2009, July 8). My Sister's Savior. Retrieved June 3, 2014, from The Center for Bioethics and Culture Network website: http://www.cbc-network.org/2009/07/my-sisters-savior/

3.)
Pennings, G., Schots, R., & Liebaers, I. (n.d.). Ethical considerations on preimplantation genetic diagnosis for HLA typing to match a future child as a donor of haematopoietic stem cells to a sibling. Oxford Journals. http://dx.doi.org/10.1093/humrep/17.3.534

4.)
Pre-implantation genetic diagnosis (PGD). (2014, April 1). Retrieved June 4, 2014, from Human Fertilisation and Embryology Authority website: http://www.hfea.gov.uk/preimplantation-genetic-diagnosis.html#6

5.)
Sherbahn, R. (n.d.). PGD and IVF Costs - What is the cost for preimplantation genetic diagnosis? Retrieved June 3, 2014, from Advanced Fertility Center of Chicago website: http://www.advancedfertility.com/pgd-costs.htm

6.)
Siegel, R. (2010, October 4). The Ethics of In Vitro Fertilization. Retrieved June 4, 2014, from http://www.npr.org/templates/story/story.php?storyId=130332035

7.)
Spriggs, M. (2003). Is conceiving a child to benefit another against the interests of the new child? Journal of Medical Ethics. http://dx.doi.org/10.1136/jme.2003.006130

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By Bethany Onyirimba and Chloe Li
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