In this episode, Professor Donrich Thaldar explains the multidimensional legal nature of personal genomic sequence data.

Summary

There are multiple legal dimensions applicable to personal genomic sequence data. These include (1) property rights, (2) personality rights, and (3) intellectual property rights. (1) Personal genomic sequence data can be owned. The entity that is in the best position to claim ownership of personal genomic sequence data is the research institution that generates such data, i.e., the research institution that does the sequencing of the DNA. However, the ownership of personal genomic sequence data can also be provided for through contract. (2) Personal genomic sequence data are the object of data subjects’ personality rights, which includes privacy rights. (3) Personal genomic sequence data are also the object of intellectual property rights. The interplay between legal dimensions (1), (2) and (3) is explained: Personality rights constrain ownership rights, while the exploitation of intellectual property rights is constrained by both personality rights and ownership rights. All of these rights applicable to personal genomic sequence data should be acknowledged and harmonized for such data to be used effectively.

Further reading

Thaldar DW, Townsend BA, Donnelly D-L, Botes M, Gooden A, Van Harmelen J, Shozi B. The multidimensional legal nature of personal genomic sequence data: A South African perspective. Frontiers in Genetics. 2022.

See also

Thaldar DW, Shozi B. The legal status of human biological material used for research. South African Law Journal. 2021.

Thaldar DW. Why POPIA does not apply to DNA. South African Journal of Science. 2021.

Funding

This episode was made possible by a grant from the U.S. National Institute of Mental Health and the U.S. National Institutes of Health (award number U01MH127690) under the Harnessing Data Science for Health Discovery and Innovation in Africa (DS-I Africa) program. The content of this podcast is solely the responsibility of discussants of the podcast and does not necessarily represent the official views of the U.S. National Institute of Mental Health or the U.S. National Institutes of Health.