475 KB83 KB201520262026Palmer, Julie Gageštevilka:1letnik:19str. 43-72DOI:10.18690/mls.19.1.43-72.2026ISSN:2463-7955COBISSID_HOST:294708739URN:URN:NBN:SI:doc-Q9ARW33RenUniversity of Maribor PressMedicine, law & societyclinical trialsexperimental drugsrespect for personsretrospective medical studiessurgical advancesterminal illnessAutonomy, desperation, and consent in experimental medicine|The most salient bioethics principle in American medical care is respect for autonomous decision-making. This principle of autonomy is established in law through ‘informed consent’ rules, which have been refined in American law for more than a century. Desperately ill individuals who enroll in research trials often believe they are accessing new therapies that will benefit them personally, even when the consent forms they sign explicitly state that no benefit is promised. This ‘therapeutic misconception’ and related autonomy-based concerns cast doubt on the genuineness of informed consent obtained from desperately ill patients enrolling in research trials. Related concerns about comprehension and consent have shaped debates about whether terminally ill patients should have access to experimental medical products outside of research trials. Suggestions are offered for enhancing informed consent by desperately ill patients and for alternatives to steering them towards research trialsNajpomembnejše bioetično načelo v ameriškem zdravstvu je spoštovanje avtonomnega odločanja. Načelo avtonomije je zakonsko urejeno s pravili o „informiranem soglasju“, ki je v ameriškem pravu uveljavljeno že več kot stoletje. Neozdravljivo bolni posamezniki, ki se vključijo v raziskovalne študije, pogosto verjamejo, da bodo imeli dostop do novih terapij, ki jim bodo osebno koristile, čeprav v soglasju, ki ga podpišejo, izrecno piše, da jim nobena korist ni obljubljena. Ta »terapevtska zmota« in z njo povezane skrbi glede avtonomije vzbujajo dvom o pristnosti informiranega soglasja, pridobljenega od neozdravljivo bolnih pacientov, ki se vključijo v raziskovalne študije. S tem povezane skrbi glede razumevanja in soglasja so oblikovale razprave o tem, ali naj imajo neozdravljivo bolni pacienti dostop do eksperimentalnih medicinskih izdelkov zunaj raziskovalnih študij. Članek predlaga ukrepe za izboljšanje informiranega soglasja neozdravljivo bolnih pacientov in alternative za njihovo usmerjanje v raziskovalne študijeTEXTznanstveno časopisjejournalsSlovenian National E-content AggregatorNational and University Library of SloveniaUniverza v Mariboru, Pravna fakulteta