Ever since the mapping of the human genome, the amount of human genetic data now being collected has been called a tidal wave of data. Such data is being stored with the principle aim of using such data for research, primarily in genetic diseases, but not exclusively. Such databases become more powerful when they are linked, because of the increased number of DNA sequences that can be searched. However, this provides for significant problems of management and governance of these databases, not least because they hold genetic information on identifiable individuals and therefore, there has to be control over access to these databases. But, beyond such issues lies a number of legal problems which relate to patients’ rights and patients’ duties to society and medical research; questions of ownership, not only of the databases themselves, but also the genetic information stored in such databases, particularly with the issues related to intellectual property rights. This brief paper examines the need for governance of such databases, principally through soft law technics of international regime analysis.
|Title of host publication||Genetic Information and Individual Rights|
|Editors||R. Arnold, R. Cippitani, V. Colcelli|
|Place of Publication||Regensburg|
|Publisher||Regensburg University Press|
|Number of pages||8|
|Publication status||Published - 1 Jan 2018|
- Genetic, Genomic, and Proteomic Databases
- Global Governance
- Right to Privacy
- Societal Good.