Ethical Dilemmas in Matched Unrelated Bone Marrow Transplant for Metachromatic Leukodystrophy (Raboan Discussion Forum)

Raboan Discussion Forum on Wednesday, 13 October 2021 was presented by two excellent collaborator of Center for Bioethics and Medical Humanities UGM:  Prof. dr. Zabidi Hussin and Asocc. Prof. dr. Teguh Haryo Sasongko, Ph.D. Prof. Zabidi is a Pro-Vice Chancellor and Professor of Paediatrics at International Medical University, Malaysia. In this Raboan he told his own experiences on managing a patient with metachromatic leukodystrophy that has been written in a book titled perilous genes.  Asocc. Prof. dr. Teguh Haryo Sasongko, Ph.D,  Deputy Director of Center for Research Excellence, Perdana University later gave the medical explanation about the disease from the pathogenesis until the treatment options. This event was moderated by dr. Rusdy Ghazali Malueka, Sp.S(K), Ph.D from Neurology Department Sardjito General Hospital – FMPHN UGM.

Metachromatic leukodystrophy (MLD) is a complex genetic disease that leads to many complication resulting in its high mortality rate. There are limited options available to cure this disease, including bone marrow transplant. Short story, the patient of Prof Zabidi finally done the experimental treatment of matched  unrelated bone marrow transplant in Minessota USA with numerous drama including: finding the donor, treatment funding, sending the sample organ in secrecy and violating the existing rules. In his pledge, Prof. Zabidi convinced that the lying was unethical but can be justified as a right thing to do since his goal is to preserve human life.

Discussion was heated by question from the audiences, one of it was about the boundaries of white lie. The panelist agree that on justifying lie, flexibility is a must and it has to be examined one by one based on the case. This case was an example of law violation that can be justified by a good intention.

The discussion was closed by a comment from dr. Azid elaborating what Prof. Zabidi did was extremely inspiring and this was a living example of how virtue ethics had been applied since Prof. Zabidi was a virtuous person himself. Somehow to just use the four basic principle or principlism to analyze ethical dilemma isn’t enough, going deeper on the root of medicine to help the others will be the key meaning. (gdf/2021)

Full video can be accessed here