Introducing ‘Health Vulnerability’. Towards a Human Right Claim for Innovative Orphan Drugs?
In: European Journal of Health LawAbstract
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.
Purchase
Buy instant access (PDF download and unlimited online access):
Institutional Login
Log in with Open Athens, Shibboleth, or your institutional credentials
Personal login
Log in with your brill.com account
| All Time | Past Year | Past 30 Days | |
|---|---|---|---|
| Abstract Views | 607 | 129 | 16 |
| Full Text Views | 51 | 9 | 0 |
| PDF Views & Downloads | 90 | 12 | 0 |
Introducing ‘Health Vulnerability’. Towards a Human Right Claim for Innovative Orphan Drugs?
In: European Journal of Health LawAbstract
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.
| All Time | Past Year | Past 30 Days | |
|---|---|---|---|
| Abstract Views | 607 | 129 | 16 |
| Full Text Views | 51 | 9 | 0 |
| PDF Views & Downloads | 90 | 12 | 0 |