NBAC (National Bioethics Advisory Commission). 1999. Research involving human biological materials: Ethical issues and policy guidance. Volume I. Report and Recommendations of the National Bioethics Advisory Commission. Bethesda, MD: National Bioethics Advisory Commission.

NBAC. 2001. Ethical and policy issues in research involving human participants: Volume II, Commissioned Papers. Bethesda, MD: National Bioethics Advisory Commission.

NCI (National Cancer Institute). 2011. NCI best practices for biospecimen resources, 2011. Office of Biorepositories and Biospecimen Research. http://biospecimens.cancer.gov/bestpractices/2011-NCIBestPractices.pdf (accessed January 10, 2012).

Newman SD, Andrews JO, Magwood GS, Jenkins C, Cox MJ, Williamson DC. 2011. Community advisory boards in community-based participatory research: A synthesis of best practices. Preventing Chronic Disease 8(3):A70.

NIH (National Institutes of Health). 2012. HIPAA Privacy Rule Information for Researchers. http://privacyruleandresearch.nih.gov/pr_08.asp (accessed February 17, 2012).

Noiville C, Bellivier F, Commin V. 2011. Biobanks for research purposes. in The ethical and legal regulation of human tissue and biobank research in Europe. Proceedings of the Tiss.EU Project. K Beier, S Schnorrer, N Hoppe, C Lenk (Eds.). Göttingen, Sweden: Universitätsverlag Göttingen. Pp. 35-50.

O’Brien SJ. 2009. Stewardship of human biospecimens, DNA, genotype, and clinical data in the GWAS era. Annual Review of Genomics and Human Genetics 10:193-209.

O’Doherty KC, Burgess MM, Edwards K, Gallagher RP, Hawkins AK, Kaye J, McCaffrey V, Winickoff DE. 2011. From consent to institutions: Designing adaptive governance for genomic biobanks. Social Science and Medicine 73:367-374.

OHRP (Office for Human Research Protection). 2008a. Guidance on research involving coded private information or biological specimens, 45 CFR part 46. http://www.hhs.gov/ohrp/policy/cdebiol.html (accessed February 17, 2012).

OHRP. 2008b. Guidance on engagement of institutions in human subjects research. http://www.hhs.gov/ohrp/policy/engage08.html (accessed February 17, 2012).

O’Neill O. 2002. Autonomy and trust in bioethics. Cambridge, UK: Cambridge University Press.

Prainsack B, Buyx A. 2011. Solidarity: Reflections on an emerging concept in bioethics. London: Nuffield Council on Bioethics.

Pritts J. 2008. The importance and value of protecting the privacy of health information: Roles of HIPAA Privacy Rule and the Common Rule in health research. http://www.iom.edu/CMS/3740/43729/53160.aspx (accessed March 15, 2012).

Pulley J, Clayton E, Bernard GR, Roden DM, Masys DR. 2010. Principles of human subjects protections applied in and opt-out, de-identified biobank. Clinical Translational Science 3(1):42-48.

Rushenberg TJ. 2007. HIPAA—A military perspective. GPSOLO Magazine 24(7).

Saha K, Hurlbut JB. 2012. Opinion: Occupy science? January 24, 2012. The Scientist. http://the-scientist.com/2012/01/24/opinion-occupy-science/ (accessed August 6, 2012).

Schadt EE, Woo S, Hao K. 2012. Bayesian method to predict individual SNP genotypes from gene expression data. Nature Genetics 44(5):603-608.

Shickle D. 2006. The consent problem within DNA biobanks. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 37(3):503-519.

Skloot R. 2010. The immortal life of Henrietta Lacks. New York: Random House, Crown Publishing Group.

Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W. 2010. Genomic research and wide data sharing: Views of prospective participants. Genetics in Medicine 12(8):486-495.



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement