Semantic, pedantic or paradigm shift? Recruitment, retention and property in modern population biobanking.
Evolving uses of human biological material, including their collection and retention in biobanks and their distribution to diverse projects, are sites of great tension from the human rights perspective. In the medical-legal setting, these rights are often protected and realised through consent practices. In the biobank setting, there endures a widely shared concern over consent, and the many divergent ways it is fashioned and deployed. This article reconsiders consent in the biobank setting, first, addressing the theoretical foundation of consent and its deployment in the broader medical context, second, examining the nature of biobanks and the uncomfortable position of consent therein, and finally, offering a means of approaching recruitment and retention in the biobank setting which is sensitive to originator interests, including human dignity, doing so within the rubric of a property model.
Harmon
Shawn H E
SH
INNOGEN, ESRC Centre for Social and Economic Research on Innovation in Genomics, University of Edinburgh.
D018070:Biological Specimen Banks / Q000331:legislation & jurisprudence*; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence; D014021:Tissue Preservation