THE USE OF GENETIC DATA BY PRIVATE PARTIES: ADDRESSING THE THREATS TO HUMAN RlGHTS

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Serval ID
serval:BIB_966FCEB6B5AE
Type
PhD thesis: a PhD thesis.
Collection
Publications
Institution
Title
THE USE OF GENETIC DATA BY PRIVATE PARTIES: ADDRESSING THE THREATS TO HUMAN RlGHTS
Author(s)
Manz Carlotta
Director(s)
Schmid Evelyne
Institution details
Université de Lausanne, Faculté de droit, des sciences criminelles et d'administration publique
Publication state
Accepted
Issued date
2024
Language
english
Abstract
In the last few years, researchers have made considerable progress in the analysis of the human genome. New developments now allow to overcome past challenges for a more widespread application of genetic analyses. What is more, genetic analysis is no longer accessible through healthcare providers only, but customers can purchase genetic kits online to gain insights about their health, response to specific nutrients, reaction to medications, or ancestry. These advances point to a promising future for medical research and deserve to be pursued. However, they also create a series of human rights issues concerning the potential misuse of genetic data by private parties. The Oviedo Convention of the Council of Europe is the only legally binding instrument that deals explicitly with the protection of human rights in the field of biomedicine. Although the Convention provides a useful legal framework in the field of genetic testing, it does not directly address the threats to an individual's human rights arising from the use of his or her genetic data by private parties. In this project, I set out to assess to what extent the Oviedo Convention, together with other relevant instruments of the Europem1 human rights framework, provides adequate protection of an individual 's human rights against the misuse of genetic data by private parties. I firstly conceptualise the key terms of my research. Secondly, I establish the existence of four key human rights threats emerging from the use of genetic data by private parties. Thirdly, for each threat, I define and interpret the norms contained in the relevant instruments of human rights law, case law, and literature. Fourthly, I evaluate the legal norms based on four explicit criteria to determine if they provide adequate protection. In the remainder of the book, I list recommendations which could potentially complement the current legal framework. The results of my research will inform the discussion about the state 's obligation to regulate private actors in the field of genetic analysis.
Create date
27/11/2024 10:45
Last modification date
28/11/2024 7:09
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