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Introducing ‘Health Vulnerability’. Towards a Human Right Claim for Innovative Orphan Drugs?
European Journal of Health Law Pub Date : 2020-04-16 , DOI: 10.1163/15718093-bja10005
Éloïse Gennet 1
Affiliation  

Although several European law instruments specifically promote the development of orphan medicines, rare disease patients still suffer from an excessive lack of access to orphan drugs. In order to base a claim for equity of access to research benefits, health vulnerability is introduced as a human rights-based public health concept. It represents a potentially valuable and powerful means in European law for rare disease patients to claim for an improved public action to develop innovative orphan drugs, including through the use of novel data-driven technologies such as computer modelling and simulation, as they have the potential to palliate some of the obstacles in the current development process of orphan medicines. The human rights-based approach would be all the more valuable, as it would simultaneously draw attention on privacy aspects of vulnerability for orphan disease patients, especially regarding increased risks stemming from the processing of highly sensitive health data.



中文翻译:

介绍“健康脆弱性”。为创新孤儿药争取人权?

尽管一些欧洲法律文书专门促进了孤儿药的开发,但罕见病患者仍然面临着孤儿药过度缺乏的问题。为了主张公平获得研究利益,健康脆弱性被引入为基于人权的公共卫生概念。它代表了欧洲法律中一种潜在的有价值和强大的手段,让罕见病患者要求改进公共行动来开发创新的孤儿药,包括通过使用新的数据驱动技术,如计算机建模和模拟,因为它们具有潜力以缓解目前孤儿药开发过程中的一些障碍。基于人权的方法将更有价值,

更新日期:2020-04-16
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