Neurológia pre prax 6/2013

Ethical aspects of help in families with spinal muscular atrophies

Progressive and incurable disease spinal muscular atrophy(SMA) belongs amongst so called low-curability diseases. In life, it brings about a lot of questions and painful situations. This illness mainly psychologically affects parents of the child; it has progressive process that often ends by the death of a child or an adolescent. From an ethical perspective, it is necessary to respect the right to life and support its fulfilment.

Keywords: spinal muscular atrophy, prenatal diagnosis, preimplantation diagnosis, tracheostomy, mechanical ventilation, palliative care, quality of life.