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Hallopeau-Siemens Syndrome
According to studies by Diedrichson et. al (2005) Hallopeau-Siemens Syndrome is a type of a rare skin disease called Dystrophic epidermolysis bullosa. This type of skin disease can be inherited, it is severe and described as a disease wherein the skin is forming a blister and organs are also affected. There are many cases where there are infants born with this disease survive because they experience the mild type of dystrophic epidermolysis. A special case of this type of disease is experienced by baby Sanne an infant with a severe type of dystrophic epidermolysis known as Hallopeau-Siemens Syndrome.
According to Crouch (2005), there are cases of hallopeau-siemens where it is only found in certain parts of the body but in Sannes case, the whole body is affected. Her doctor, Dr. Verhagen said that if she can only live until nine or ten years old then later on die because of skin cancer. Just by looking and hearing baby Sannes cry it shows pain and extreme stress. The parents of Sanne ask Dr. Verhagen to end the babys suffering, in their country euthanasia is legal but not for someone under 12 years old which is why the doctor did not euthanize Sanne, it may lead to a criminal prosecution.
Months later Sanne died not because of her disease but because of pneumonia. With baby Sannes’s condition, according to utilitarianism, it was more humane to euthanize Sanne than prolong her agony because it may cost the family fortune and the uncertain health of the baby. Also, in an article it was mentioned that infanticide is moral because it seems to be that in Sannes’s case, it is moral and humane to end the life of the infant, rather than continue the suffering. According to the book of Mackinnon and Fiala(2014) Peter Singer who is a Utilitarian philosopher has a stand that it is much better to end the life of a terminally ill infant and replace it with a healthy one. Also, according to him killing a disabled infant is not morally equivalent to killing a person, very often it is not very wrong at all . In the article of Moosa(2012) considering the Groningen protocol, a protocol for infant euthanasia it focuses on preventing the suffering of an infant. According to an article by Holt(2005) in New York Times Magazine, If the newborn’s prognosis is hopeless and the pain both severe and not believable, it observes, the parents and physicians may concur that death would be more humane than continued life. .
Knowing about Sannes case I think it is more humane to euthanize her than prolong her suffering. I do understand the stand of Peter Singer in killing a terminally-ill infant but for the parents of Sannes, if they replace Sanne it is possible that it may also develop the same case as Sanne since according to studies that this kind of disease is inheritable so it is a hundred percent possible that the disease of Sanne can be from the parents. For me, Groningen protocol should be considered especially in Sannes’s case. It states that Groningen’s protocol, focuses on preventing the suffering experienced by an infant and it is clear that the parents of Sanne give consent to end her suffering. Other than what is mentioned above, if we consider Felcific calculus by Jeremy Bentham in utilitarianism. We can consider these ethical precepts Intensity: how much pain is felt by Sanne or her parents because of her situation, Duration: how long the pain will be felt by Sanne if we prolong her life, Certainty: the chance that her pain will occur, Propinquity: until when the pain of Sanne is experienced, Fecundity and Purity chance that the pain will lead to another pain lastly Extent: how many people are affected by the case of Sanne. Those precepts can support why it is okay to euthanize Sanne. Euthanizing Sanne should be considered because if there is pain felt by a normal person who experiences a small blister how much pain it will give to Sanne who experiences Hallopeau-Siemens a blister-forming disease? Just thinking about having blisters aches me what more for Sanne? I think utilitarianism is applicable to her situation, specifically negative utilitarianism because her parents and her doctors also felt the pain and in negative utilitarianism is preventing the greatest amount of suffering and if we consider the number of those who are affected by this it can be a strong reason on why it is more humane to euthanize Sanne than prolong her suffering.
References:
- Diedrichson, J., Talanow, D., & Safi, A. (2005). Epidermolysis bullosa dystrophic (Hallopeau- Siemens) a der Hand – Operative Strategie und Ergebnisse. Handchirurgie · Mikrochirurgie· Plastische Chirurgie, 37(5), 316322. doi:10.1055/s-2005-872849
- MacKinnon, B., & Fiala, A. (2014). Ethics: Theory and Contemporary Issues(8th ed.). Retrieved fromhttps://books.google.com.ph/books?id=J8WiAgAAQBAJ&pg=PA197&lpg=PA197&dq=hallopeau+siemens+syndrome+and+ethics&source=bl&ots=aeLbH0nah2&sig=ACfU3U2THyDEO_V2yGYV0HEDUJ92hTxpzQ&hl=en&sa=X&ved=2ahUKEwjht9uxg5jiAhUSxosBHaJsB6I4ChDoATAAegQICRAB
- Moosa, T. (2012). Why Infanticide Can Be Moral. Retrieved from https://bigthink.com/against-the- new-taboo/why-infanticide-can-be-moral
- Crouch, G. (2005). A Crusade Born of a Suffering Infant’s Cry. Retrieved from https://www.nytimes.com/2005/03/19/world/europe/a-crusade-born-of-a-suffering-infants-cry.html
- Holt, J. (2005). Euthanasia for Babies? Retrieved from https://www.nytimes.com/2005/07/10/magazine/euthanasia-for-babies.html
- https://bigthink.com/against-the-new-taboo/why-infanticide-can-be-moral
- https://bigthink.com/against-the-new-taboo/why-infanticide-can-be-moral
- https://www.nytimes.com/2005/07/10/magazine/euthanasia-for-babies.html
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