Labour rights of the rare diseases population ‒ breaking the glass ceiling

This paper aims to introduce a legal framework for exercising one of the most basic socio-economic rights of people with rare diseases: the right to decent work. Considering the specificity of the medical and, consequently, social status of the people affected, the appropriate labour-law measures need to be determined. Applying the comparative and normative method along with the contemporary anti-discrimination principle, the labour status of the rare diseases population has been analysed based on the proposed classification in legal terms. As a precondition for labour legislation, new Serbian healthcare legislation on rare diseases should be supported through the process of implementation to reduce adverse cases as effectively as possible, advance genetic and other clinical diagnoses, and thus increase the efficiency of available medical treatment. Concerning public health policy, updated registries and better health statistics should be created. These activities require certain amendments to both general and specialist labour legislation (disability legislation), aiming to include patients with rare diseases in the working (and social) environment without discrimination

Nove tendencije u razvoju zakonodavstva u oblasti biomedicinski potpomognutog oplođenja

In recent years, an incredible result has emerged in the field of biomedicine and genetic engineering, which has enabled the detection and treatment of various diseases and disorders. Biomedically assisted fertilization has opened numerous legal, ethical and social issues related to human conception, extending dilemmas to increasingly complex issues such as the possibility of interfering with the human genome (treatment and transfer of genes), prenatal diagnosis, reproductive or therapeutic cloning, etc. Some of these questions relate to the persons entitled to these procedures, or which persons may be subject of biomedically assisted fertilization. In addition, it is necessary to regulate the issue of giving or using donor genetic material, and under what conditions. Also, it is necessary to define a list of allowed conception techniques of biomedical assistance in order to prevent the use of insufficiently reliable and proven techniques

Right to Health Care of The People Suffering From Rare Diseases – Case Study of Serbia Legislation

People with rare diseases are facing with numerous challenges in exercising right to health care. Access to health care system is often limited taking into account that there is still lacking the classification and codification of the rarest diseases. The revision version of the International Classification of Diseases of the World Health Organization (ICD-11) is scheduled to be realized in 2018 and is expected to include the category of rare diseases as well. Serbia amended Health Care Law establishing the centers for rare diseases and adopted the new Prevention and diagnosis of genetic diseases, genetic conditioned anomaly and rare diseases Law (2015). This paper aims to provide analysis of the medico-legal status of patients with rare diseases in Serbia considering the European Union legislation and recent trends in international policy and law in this field

Pravni i etički aspekti sankcionisanja osiguranih lica usled neodazivanja na skrining

Već decenijama je prevenciji i promociji zdravlja posvećena posebna pažnja. Jedna od mera prevencije i očuvanja dobrog zdravlja je skrining, odnosno organizovani ciljani preventivni pregled. U proleće 2019. godine usvojen je Zakon o zdravstvenom osiguranju koji, između ostalog, predviđa obaveznost odazivanja na skrining programe. Osobe koje se ne odazovu na skrining, a do narednog ciklusa pozivanja dijagnostifikuje im se bolest koju skrining treba da predupredi, snosiće novčanu sankciju, u vidu učestvovanja u troškovima lečenja sopstvenim prihodima. Ovako usvojeno rešenje izazvalo je reakcije, sa pravnog, ali i etičkog stanovišta. U radu će se sagledati i razmotriti pitanje ustanovnosti navedenog rešenja, kao i opravdanost i dopuštenost primene pomenute odredbe