Amit and Saroj were a married couple with a four-year-old healthy daughter. Amit and Saroj wanted to expand their family. They planned accordingly and had a boy named Arjun. Amit and Saroj were very happy as they felt their family was complete now. But this happiness was short-lived. Arjun was diagnosed with thalassemia when he was just ten months old. Amit and Saroj were devastated. Arjun needed blood transfusion every three weeks, resulting in chronic weakness and a compromised immune system causing frequent illness. The average lifespan of a thalassaemia person is only 30 years and there is no permanent tradition cure for this disease. A bone marrow transplant is the only treatment for this disease but his sibling’s bone marrow was not a match. Amit and Saroj started reading medical literature related to thalassemia to better understand the disease and find a potential cure.
The couple then found out about the concept of ‘saviour sibling’ and decided to go ahead with it. A saviour sibling is a child conceived through selective in-vitro fertilisation (IVF) as a potential source of donor organs or cells for an existing brother or sister with a life-threatening medical condition. They consulted a leading fertility expert and persuaded him to prepare thalassaemia free foetus. In the initial phase eighteen embryos was found to be suitable for matching the criteria of donor for Arjun and that embryo was implanted in Saroj.
The couple had another health daughter, Kavya. They wanted for two years so that the weitght of new born baby could increase to the 10-12 kg range, minimum for a donor. Finally, the bone marrow transplant procedure was performed successfully. Although the procedure is not life threatening, it is extremely painful. Kavya had pain for many days and her blood haemoglobin level dropped after the bone marrow transplant. But, after some days she recovered. Now both Arjun and Kavya are healthy.
Approach : Introduce by identifying the subject matter of the case study. In brief also mention the background of the case including the medical ethics. Explain the ethical arguments for and against the saviour child therapy and argue on the ethicality of consent regarding bine marrow donation. In second point, justify whether organ donation including harmful effects is ethical or not. Provide a suitable way forward for this ethical issue in the conclusion.
Answer : The given case study involves a question of medical ethics, where a child is being given birth with specific biological traits to save another child. Also, as per Kant, humans should be the ends in themselves and not the means. The given case calls for a just decision making where the wisdom of parents, doctors and society is involved.
(a) Ethical arguments in favour of saviour child therapy
- As per law based ethics, Amit and Saroj are moral agents as the given therapy is currently no illegal, hence parents of the child have not committed any unlawful activity.
- Life of a human being is the most precious thing. It is the moral duty of human beings to save the life of other human beings. Given this condition saviour child therapy is justified.
- Going by the idea of consequentialism, this therapy is justified as it helps to save the life of a person as a consequence.
- Even by utilitarianism, it is justiciable as it bring happiness to the maximum number of people (Amit, Saroj & Arjun).
However, there are many valid ethical arguments against the saviour child therapy such as :
- This therapy focuses on ends rather than means. The objective of this therapy is to save life, however, it also put physical and mental stress on the donor. Therapy, it does not justify the means to ans end. Hence, it goes against the deontological approach.
- A new child was born just to save the life of another child which is against the basic human right of a new born child.
- This therapy brings into focus the issue of ”designer baby” and starts a slippery slope.
- This therapy puts the new born child under immense physical pain without his/her fault.
- As the do not child is a minor who is not able to provide a logical consent hence utilising their biological factors its unethical.
As this therapy involves both ethical and unethical dimension, the final decision should be made after careful consideration of pros and cons on a case-to-case basis.
The decision given by the parents on behalf of child, without his/her consent, may be considered ethical in this case because :
- The donation of bone marrow saved a precious life.
- The child may have not lived long enough for the new child to grow and give consent for the donation.
- All other options were explored by parents before giving such a consent.
(b) If the therapy involves organ donation and a new child is given birth just to provide organs to the existing child then, this cannot be justified ethically because of the following reasons :
- As organ donation involves lifelong disability, hence new born child becomes a commodity which is utilised to meet an end.
- Organ donation is based on the personal consent of the donor. As a do not child is minor his or her consent remains missing. It also goes against the basic human rights of a child.
- It becomes a part of the zero-sum game where gain of one is equal to loss of another. And it is completely wrong on humanitarian grounds as well.
On humanitarian grounds, it is logical to support those parents who have been on the place of Amit ans Saroj. However, at the same time we need to ensure that the new child who is born to save the life of others does not face any human rights violation. We also need to understand that humans should not be taken as means to meet the ends of other humans. Such therapies can be provided as the last resort when all other means are exhausted.
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