Genes, cells, and biobanks: Yes, there's still a consent problem
- PMID: 28742850
- PMCID: PMC5526496
- DOI: 10.1371/journal.pbio.2002654
Genes, cells, and biobanks: Yes, there's still a consent problem
Abstract
From a research perspective, the interest in biobanking continues to intensify. Governments and industry have invested heavily in biobanks, as exemplified by initiatives like the United Kingdom Biobank and United States' Precision Medicine Initiative. But despite this enthusiasm, many profound legal and ethical challenges remain unresolved. Indeed, there continues to be disagreements about how best to obtain consent and the degree and nature of control that research participants retain over donated samples and health information. Emerging social trends-including concerns about commercialization and perceived rights of continuing control ("biorights")-seem likely to intensify these issues.
Conflict of interest statement
The authors have declared that no competing interests exist.
References
-
- Henderson GE, Cadigan RJ, Edwards TP, Conlon I, Nelson AG, Evans JP et al. Characterizing biobank organizations in the US: results from a national survey. Genome Medicine. 2013. January 25;5(1):3 doi: 10.1186/gm407 - DOI - PMC - PubMed
-
- Futurism. U.S. To Collect Genetic Data For Biobank, What This Means For You. Futurism. 16 Feb 2015. Available from: https://futurism.com/u-s-collect-genetic-data-biobank-means/
-
- Park A. 10 ideas changing the world right now: Biobanks. Time. 12 Mar 2009. Available from: http://content.time.com/time/specials/packages/article/0,28804,1884779_1...
-
- Vaught J, Rogers J, Carolin T, Compton C. Biobankonomics: developing a sustainable business model approach for the formation of a human tissue biobank. Journal of the National Cancer Institute. 2011. January 1(42):24–31. - PubMed
-
- Terry SF. Obama's precision medicine initiative. Genetic Testing and Molecular Biomarkers. 2015. March 1;19(3):113–4. doi: 10.1089/gtmb.2015.1563 - DOI - PMC - PubMed
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