The topic for this essay is about saviour siblings.
Provide a normative argument, meaning to argue in favour of a position.
Please write an argument from the position of a designated decision-maker (DDM) from the following scenario.
A child, Ethan, has been diagnosed with Wiskott –Aldrich syndrome. This is a life-threatening illness, and reduces his quality of life substantially.
His elder brother, Jefrey, was cured via a marrow transplant from a younger brother, Charlie. Charlie is not a match for Ethan.
His parents would like to have another child with the intention that it will be a saviour sibling for Ethan.
In this essay, it is required to;
Identify and apply major ethical theories and principles;
Apply skills of ethical reasoning and analysis to current issues in reproductive medicine and medical research;
Better understand and relate to your own moral commitments and decisions, in addition to those of others.
Please use Harvard referencing.
It is part of a forum, below I have given an example of a response that has already been submitted to help with the task layout etc.
“As a DDM considering this case, I have deemed it is ethical to allow the Thompson’s to use IVF with PGT to create a saviour sibling for their son Ethan. I have considered this decision from each persons’ perspective.
Ethan:
Without the BMT, Ethan will have a chronic health issues including chronic eczema, frequent infections, an increased bleeding risk including easy bruising and internal bleeding. These health issues require frequent hospital visits and infusions and some of the complications from his condition can be life-threatening. With the BMT, Ethan will potentially be cured like his brother. The alternative of using an unmatched donor is an options, however, a sibling matched donor is superior in terms of the success of the BMT and lower risk of GVHD, thus a better outcome for Ethan. A saviour sibling may very well save his life.
Parents:
Ultimately Ethan’s parents’ are autonomous individuals who are able to make informed decisions about their reproductive choices and the right to procreate.(1) IVF with PGT is expensive, invasive and has associated risks. They may also require multiple rounds in order to find a HLA compatible embryo that also does not carry the genetic condition WAS. Ethan’s parents want to do the absolute best thing for their child. Zeirhut et al’s paper was a descriptive analysis of parental experiences with PGT in of children with Fanconi anaemia (FA) and they found the health of the child was the most important factor in parents decision making process to undergo PGD. (2) Additionally, their findings demonstrated that parents who underwent PGD had little regret for the decision to do so, regardless of their IVF outcome. (2)
Saviour sibling:
Ultimately, proponents against saviour siblings will argue that the creation of a sibling for the purpose of a BMT diminishes the life of the saviour child. They will argue the child may come to physical and psychological harm from being a saviour sibling and could impact on relationships and the family dynamic. This does not consider the positives impact it may bring knowing that they were able to save their sibling’s life. Additionally, according to the non-identity principle, the saviour sibling would not exist if Ethan’s parents did not use IVF with PGT to create them. Thus, arguing of harm to the saviour child must be balanced against the alternative, which is non-existence. It is illogical to argue that non-existence is superior to being born to help save a sibling. This principle has been upheld in Australian high courts where children born with disabilities have no right to compensation for wrongful life.3
Societal implications:
Having a readily available matched donor via a saviour sibling could lead to cure for Ethan. This would mean less of an economic burden on his family and on the healthcare system. Additionally, IVF with PGT would mean any children born to Ethan’s parents will not be affected by WAS and thus not have to undergo the pain and suffering of having a severe chronic health condition.
Ultimately, as a DDM there are two options to consider.
1. Deny the IVF with PGT to create a saviour sibling for Ethan. This would lead to him to have ongoing chronic life-threatening health concerns and potentially a long wait for an unmatched donor for a BMT. If he is lucky to receive a BMT he is at a higher risk of failure and GVHD. This option leads to considerable pain and suffering for Ethan and his family and rejects his parents autonomy.
2. Allow IVF for PGT to create a saviour sibling for Ethan. This is more than likely to lead to a cure for Ethan and it respects the autonomy and reproductive rights of his parents. Overall, the benefit of this outweighs the potential risks and harm to the saviour sibling.
The morally and ethically right decision is to allow IVF for PGD to create a saviour sibling for Ethan.
1. Brake, Elizabeth and Joseph Millum, “Parenthood and Procreation”, The Stanford Encyclopedia of Philosophy (Spring 2022 Edition), Edward N. Zalta (ed.), URL = .
2. Zierhut, H., MacMillan, M. L., Wagner, J. E., & Bartels, D. M. (2013). More than 10 Years After the First ‘Savior Siblings’: Parental Experiences Surrounding Preimplantation Genetic Diagnosis. Journal of Genetic Counseling, 22(5), 594–602. https://doi.org/10.1007/s10897-013-9591-5
3. David Hirsch. (2006). Rights and Responsibilities in Wrongful Birth/Wrongful Life Cases. University of New South Wales Law Journal, 29(2), 233–238.”
