Turkiye Klinikleri Journal of Medical Ethics-Law and History

.: REVIEW
SMA Tarama, Tanı ve Tedavisinde Karşılaşılan Etik Sorunlar, Sağlık Politikalarında Yükselen Popülizm ve Medyanın Etkisi: Sistematik Derleme
Ethical Problems Faced in SMA Screening, Diagnosis and Treatment, Rising Populism in Health Policy and Impact of the Media: Systematic Review
Gülten DİNÇa , Mehmet Gökhan AKINb , Zeynep ERATb
aİstanbul Üniversitesi-Cerrahpaşa, Cerrahpaşa Tıp Fakültesi, Tıp Tarihi ve Etik ABD, İstanbul, Türkiye
bİstanbul Üniversitesi-Cerrahpaşa, Cerrahpaşa Tıp Fakültesi, İstanbul, Türkiye
Turkiye Klinikleri J Med Ethics. 2024;32(1):64-75
doi: 10.5336/mdethic.2023-99285
Article Language: TR
Full Text
ÖZET
 Spinal musküler atrofi (SMA), ilerleyici ve kalıtsal bir motor nöron hastalığıdır. Beş tipi olan hastalığın günümüzde kesin bir tedavisi yoktur. Güncel tedaviler hastalığın ilerleyişini yavaşlatıp hastaların yaşam süresini uzatsa ve yaşam kalitesini iyileştirebilse de tedavilere ilişkin birçok sosyal ve etik problem ortaya çıkabilir. Ortaya çıkan bu problemler arasında; tedavinin çok yüksek olan maliyeti, tedavi sürecinde dijital ve konvansiyonel (geleneksel) medyanın gücünden yararlanma olanaklarındaki eşitsizlikler, kaynakların adil olmayan dağılımı ve SMA'ya ilişkin sağlık politikalarında yükselen popülizm sayılabilir. Bununla beraber SMA hastalığına ilişkin etik problemler sadece tedavi ile sınırlı değildir. Tanı ve tarama testlerindeki yetersizlikler, hastaların palyatif bakım ve yaşam sonu desteğine ihtiyaç duyabilmesi, hastaların ve ailelerin aydınlatılmış onamlarının alınması, yasa ve yönetmeliklerin uygulanmasındaki güçlükler ve bu gibi birçok konu da etik açıdan tartışmalıdır. Tüm bunlara ek olarak söz konusu etik problemlerin ana öznesini çoğu zaman; savunmasız bir hasta grubunun yani bakıma muhtaç çocukların oluşturduğu gerçeği bu etik problemleri daha da karmaşık hâle getirmektedir. Ancak SMA'nın oldukça geniş bir yelpazede birçok etik probleme neden olmasına karşın hastalığı tıp etiği açısından irdeleyen yeterli sayıda kaynak bulunmamaktadır. Bu nedenle makalede özellikle ülkemiz açısından; hastalığın tarama, tanı ve tedavisi sırasında ortaya çıkabilecek etik sorunlar ile birlikte sağlık politikaları ve hastalıkla ilgili popülizmde medyanın etkisi gözden geçirilecektir.

Anahtar Kelimeler: SMA; etik; tıbbi kitle fonlaması; sağlık politikaları; medya etkisi
ABSTRACT
 Spinal muscular atrophy (SMA) is a progressive and inherited motor neuron disease. The disease has five types and currently there is no definitive treatment for the disease. Although current treatments can slow the progress of disease, prolong patient's life span and improve quality of life; they can lead to many social and ethical problems. These problems include; extremely high treatment costs, inequalities in utilization of digital and conventional (traditional) media power during the course of treatment, unfair distribution of resources and rising populism in health policies regarding SMA. Furthermore, ethical problems relating to SMA are not limited only to its treatment. Many issues such as imperfections in the diagnosis and screening tests, patients' need for palliative care and end-of-life support, obtaining informed consent of patients and families, and difficulties in the execution of laws and regulations are also ethically controversial. Additionally, the fact that the main subject of aforementioned ethical problems caused by a vulnerable patient population; children in need of nursing care most of the time, makes these ethical problems even more complex. Although SMA causes a wide range of ethical problems, there is no sufficient number of resource examining the disease under the scope of medical ethics. Therefore, in this article, we will examine the ethical problems that may arise during the course of screening, diagnosis and treatment of the disease, especially in Türkiye, as well as the impact of the media on health policies and populism related to the disease.

Keywords: SMA; ethics; medical crowdfunding; health policies; media influence
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