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Bibliography of Relevant Publications by Participants in the Think Tank on the Identifiability of Biospecimens and "-Omic" Data

• Data Sharing Policy Publications
• Ethics/Law/Human Subject Protections Publications
• Genomics Publications
• Industry Publications
• Informatics Publications
• Research Participant Advocacy Publications

Note: The names of Think Tank participants are bolded in the publications listed below.

Data Sharing Policy Publications

• Clayton EW, Ramos E, Rodriguez, LL et al. Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium. Genet Med. 2010 Oct; 12(10):616-20.
• Im, HK et al. On Sharing Quantitative Trait GWAS Results in an Era of Multiple-omics Data and the Limits of Genomic Privacy. Am J Hum Genet. 2012 Apr 6; 90 (4):591-8.
• Knoppers B et al. Towards a Data Sharing Code of Conduct for International Genomic Research. Genome Med. 2011 Jul 14; 3 (7): 46.
• McGuire A et al. To share or not to share: A randomized trial of consent for data sharing in genome research. Genet Med. 2011 Nov; 13 (11):948-55.
• Kauffman Task Force on Cost-Effective Health Care Innovation. Valuing Health Care: Improving Productivity and Quality [PDF - 3.67MB]. Published April 2012.
• Walker L et al. dbGAP Data Access Requests: A Call for Greater Transparency. Science Translational Medicine. 3:113cm34.
• Wilbanks, J. Data Sharing as a Means to a Revolution. (PowerPoint presentation)

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Ethics/Law/Human Subject Protections Publications

• Angrist M. Here is a Human Being: At the Dawn of Personal Genomics. New York, NY: HarperCollins Publishers; 2010.
• Gellman R. Why Deidentification Fails Research Subjects and Researchers. Am J Bioeth. 2010 Sep; 10(9): 28-30.
• O'Rourke P. Personalized Medicine, The Promise of Perplexing Problems (PowerPoint presentation)
• Rothstein M. Is Deidentification Sufficient to Protect Health Privacy in Research? Am J Bioeth. 2010 Sep; 10 (9): 3-11.
• Schwartz PM and Solove DJ. The PII Problem: Privacy and a New Concept of Personally Identifiable Information. NYU Law Rev. 2011; 86: 1814.
• Tabor HK, Hull SC et al. Genomics Really Gets Personal: How Exome and Whole Genome Sequencing Challenge the Ethical Framework of Human Genetics Research. Am J Med Genet A. 2011 Dec; 155A(12): 2916-24.
• Wagner J. Cockamamie State Laws Threaten Genetic Rights. Nat Med. 2012; 18:485.
• Yakowitz Baumbauer J. Tragedy of the Data Commons. Harvard Journal of Law and Technology. 2011; 25.

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Genomics Publications

• Biesecker LG et al. The ClinSeq Project: piloting large-scale genome sequencing for research in genomic medicine. Genome Res. 2009 Sep; 19(9):1665-74.
• Chanock SJ and Thomas G. The Devil is in the DNA. Nat Genet. 2007 Mar; 39 (3): 283 - 284.
• NOVA. Public Genomes: Expert Q&A. (features G. Church)
• Schadt E et al. Baysian Method to Predict Individual SNP Genotypes from Gene Expression Data. Nat Genet. 2012 May; 44 (5):603-8.

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Industry Publications

• Chahine K. Industry Opposes Genomic Legislation. Nat Biotechnol. 2002 May; 20 (5):419.
• YouTube. Q&A at TEDMED 2011. (featuring A. Dombkowski)

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Informatics Publications

• Greenbaum D, Gerstein M et al. Genomics and Privacy: Implications of the New Reality of Closed Data for the Field. PLoS Comput Biol. 2011 Dec; 7(12): e1002278.
• Holman J, Ma ZQ, Tabb D. Identifying Proteomic LC-MS/MS Data Sets with Bumbershoot and IDPicker. Curr Protoc Bioinformatics. 2012 Mar; Chapter 13; Unit 13.17.
• Homer N, Craig D et al. Resolving Individuals Contributing Trace Amounts of DNA to Highly Complex Mixtures Using High-Density SNP Genotyping Microarrays. PLoS Genet. 2008 Aug 29; 4 (8): e1000167.
• Malin B, Clayton EW et al. Identifiability in Biobanks: Models, Measures, and Mitigation Strategies. Hum Genet. 2011 Sep; 130 (3), 383-92.
• Sherry S et al. dbSNP: the NCBI Database of Genetic Variation. Nucleic Acids Res. 2001 Jan 1; 29 (1):308-11.
• Mailman M, Ostell J, Sherry S et al. The NCBI dbGaP database of genotypes and phenotypes. Nat Genet. 2007 Oct; 39(10):1181-6.

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Research Participant Advocacy Publications

• Collyar DE. Biospecimens and People: A Fundamental Connection. J Natl Cancer Inst Monogr. 2011; 41-2.

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