I want you to close your eyes, and tell me. Tell me- how you would feel.
How WOULD you feel?
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If you learned that the only reason you were born was to save the life of another.
That you ARE- and always will be- the second choice.
That your parents have, to the objective standards of society/loved your sibling more than you, before you were even born.
Before they even had the chance to get to know you.
That you were conceived solely to save your sibling who was born out of love
What Saviour Siblings are
Sadly, this is the hidden reality for many babies known as saviour siblings. It’s all they’ve ever known. To them, that is their norm: to them, it’s perfectly fine. So, what are saviour siblings? In a nutshell, saviour siblings are children that are conceived with the purpose of providing medical relief for an older sibling diagnosed with terminal illnesses such as leukemia, cancer or Fanconi anemia. It refers to the use of pre-implantation genetic diagnosis (PGD) and other forms of in-vitro fertilization (IVF) in order to create a sibling for the purpose of providing biological material (bone marrow, blood, etc.) that can help treat or cure an existing terminally ill child.
conceived by artificial insemination on top of the selection of an embryo based on its blood, has sent new flames into the hot parliamentary debate over the reform of bioethics law.
The child’s deliberate embryonic selection rested on it not having the gene for beta thalasaemia, and its birth potential to help cure beta-thalasaemia suffered by two older siblings. Theoretically, the use of ‘saviour siblings’ has been allowed since 2006, when the 2004 Bioethics Law and associated decrees was passed. The USA has utilised this for about ten years, but such a birth is rare in Europe – and, depending on the results of a current debate, might become even rarer in France.
My Argument
Today, I am going to tell you about the ethical issues concerning living organ donation among minors, and why assent should be made illegal - allowing only the child to be able to give consent to live organ donation and other invasive procedures once they reach the legal age of 18. Essentially, this means I believe donating blood and other minor procedures are acceptable, however major invasive procedures such as organ transplants which pose lasting implications and greater risks to the saviour sibling and no direct benefit to them whatsoever, should simply not be allowed, regardless of a case by case basis.
My Sisters Keeper
There is a book with a movie adaptation , “My Sister’s Keeper by Jodi Picoult”, entails the story of a young girl suing her parents for emancipation as she doesnt agree to donating one of her kidneys to her terminally ill sister. The movie opened my eye on this issue which is given such little attention. It opened my eyes to the hidden world of injustice enveloped behind the mask of a happy, interdependent family. Of how innocent children have, either intentionally or unintentionally, been brainwashed and conditioned to believe, since birth,that their sole purpose in life is to help their sibling. And they do not question it, they never question it, for it's the people they love most and hold dearest to their heart that have led them to believe this,
That needs to change.
RISKS & Severity of procedures
umbilical cord & blood transfusions are fine but transplants etc pose risks to saviour sibling that could result in death, no medical need for themselves to undergo a procedure (legal guidelines 16 or 18 to donate) , ANESTHESIA., Graft-versus-host disease (allogeneic transplant only), Stem cell (graft) failure, Organ damage, Infections, Cataracts, Infertility, New cancers, Death
Psychological effects it has on the child
Case study the Whittaker family: jamie and charlie in uk - charlie had anemia, when jamie was born, took his umbilical cord, no invasive procedures - at 3 years old, he told in an interview that jamie knew he was born for charlie, to save charlies life , what are the implications on development of child knowing that, most of us have a n individual sense of identity or live for ourselves, when young, you don't know your life purpose, you find out and learn as you grow, its that search thats integral to development how would you feel forms a large part of our adult identity. Imagine knowing immediately that your purpose is set for you , telling someone what their purpose if just isn't right , your purpose was decided before you were even born, no matter what you do, you born for the sole purpose of saving another sibling
- This has major psychological impacts on a child, leading them to possibly view them as an asset, a handy tool, rather than an established and valid family member
- Ability to make decision or grant informed consent on subject of organ donations, lack of autonomy
- Can only drive or smoke or drink but can have your organs taken from you before that family pressure when the intended recipient is a close relative of the minor donor
- Take away the need for emancipation
Even if they agree, due to major pressure from family SINCE BIRTH, sense of obligation, “their responsibility” to save their siblings life whm they love and if they dont they feel bad and guilty
Ethical issues surrounding the conception or perfection of saviour siblings
As they are to be donors to their sibling with illness, parents need to ensure their saviour child is compatible biologically to their existing child, and doesn't have any genetically inherited diseases or the like. They do this by selecting an embryo out of the many they have created, to conceive the child via in-vitro fertilisation. However, this means the rest if the embryos will get destroyed, and essentially, killed because they weren’t perfect enough. This comes down to a debate similar ot that of the right to aboriton, Discovery of embryos - abortion aspects . As the Late term abortion - dont want baby if it doesnt match, aborts a fully formed baby.
Ending
There has been little meaningful discussion about savior siblings in bioethical or legal circles, and there is no formal regulation governing their use or creation in the United States. This stands in stark contrast to other countries, particularly England, France, and Australia, where a regulatory framework for the use of savior siblings has arisen along with debate over their acceptability. These countries are already discussing how to ethically deal with this extremely complicated issue.
I believe this is vital to the psychological and also physiological aspects of the saviour siblings development. Assent is when parents override or give consent on behalf of their saviour child to donate the likes of bone marrow, skin, organs such as the liver and kidney, and so forth. Most of these saviour kids are too young to even grasp the idea of organ donations or transplants. They cannot comprehend the true risks associated with it! Therefore they cannot make a truly informed decision about these more invasive procedures. Even if they were to give consent, it should be made illegal if they are under the age of 18 as their decision would likely strongly be affected by the [pressure from the family, since birth, and the love between one another causing them to overlook the risks and complications of transplant surgeries. A child shouldn’t need to sue for emancipation to gain control over their body. And what if when they grow up, they want to retract, go back, want their organ back. Because it was unwillingly or unwittingly, essentially, taken from them without their full informed consent. Saviour siblings have essentially been manipulated and brainwashed since birth and that’s probably why there hasn’t been much uproar about it, not much news about it- when i googled this topic, most of the articles were from 2004! So little thought goes into protecting the mental and emotional states of these children and its time we stopped that. Saviour siblings, heroes but not by choice, the name doesn’t stand true to their treatment, in reality they probably feel like a second choice and will impact their self esteem, dignity, honour as a human being and so on.
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