Future unspecified use of tissue and data in biobank research

Abstract

Although the concept of ownership of human tissue as well as the question of the rights of the tissue source to excised tissue have not been fully developed in law either in Nigeria or in England, recent developments in genetic science and biobank research have made this a contemporary controversy in the sense that biobank research has become an integral part of the process of developing diagnoses and therapies for complex diseases. Biobanks can be used not only for basic research aimed at developing therapeutic products or understanding fundamental biological principles such as molecular mechanisms etc., but also for clinical and epidemiological research. They are now a prerequisite for conducting Genome Wide Association Studies (GWAS) that explore connections between genotypes and phenotypes in order to identify genetic risk factors for common diseases such as heart disease, autoimmune diseases and psychiatric disorders. In spite of the growing importance of biobank research and the attendant significance of the role of the tissue source to the development of science, the law has not developed clear-cut principles that protect the interests of a tissue source who contributes valuable samples or data to biobank research. In the context of biobank research, this discussion engages two intersecting interests: the individual interest of the tissue source, and the communitarian interests of the overall public good that the prospect of biobank research brings. Within this discussion, the thesis discusses protecting the tissue source, his entitlement to privacy of his data; as well as his entitlement to choosing when and if he wants his data or samples used in future research. The thesis also proceeds from a supposition that the tissue source should be given a say in the decisions relating to secondary uses of the samples and data. By this position, the thesis is not advancing a case for an abolition of biobank research, but that the autonomous choice of the tissue source in relation to future research be recognised and protected.

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Identifiers

ORCID for Remigius Nwabueze: orcid.org/0000-0002-3100-6427

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