Center for Medical Ethics and Health Policy

Completed Sequencing and Biobanking Projects

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Tumor Banking for Genomic Research and Clinical Translation

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Funded by the Cancer Prevention Research Institute of Texas, this project has led to the development of the Texas Cancer Research Biobank, a biobank created to bridge the gap between clinicians and researchers to improve the prevention, diagnosis and treatment of cancer. The TCRB links several ongoing research activities in Texas to a centralized, highly curated biobank, resulting in the collection of ≥2,000 samples since its inception in 2010. Part of the project, led by Dr. Amy McGuire, is specifically studying the ethical, legal, and social implications of this research. The ELSI unit coordinates and harmonizes recruitment procedures, institutional review board protocols, ethics policies, and informed consent documents across sites. An ethics advisory committee, with oversight and participation from the ELSI unit, provides, provides guidance on controversial ethical and policy issues that arise during the life of the biobank to ensure that biobank policies and procedures are updated and consistent with changes in public policy. Additionally, the ELSI unit is empirically studying the stakeholder perspectives of biobank research participants and scientific investigators to explore their practices and thoughts on storing and sharing biological samples.

Project Personnel: Richard Gibbs, Ph.D., Principal Investigator; Amy McGuire, J.D., Ph.D., Project 4 Co-Principal Investigator, Stacey Pereira, M.A., Research Assistant

Supported by: RP101353-P04, Cancer Prevention Research Institute of Texas (CPRIT)

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Publications Related to Biobanking and Sequencing

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Bathe OF, McGuire AL. The Ethical Use of Existing Samples for Genome Research. Genetics in Medicine 11(10), 2009: 712-715.

McGuire AL, Beskow LM. Informed Consent in Genomics and Genetic Research. Ann. Rev. Genomics Human Genet. 11, 2010: 361-381.

McGuire AL, Cho MK, McGuire SE, Caulfield T. The future of personal genomics. Science 317, 2007: 1687.

McGuire AL, Caulfield T, Cho M. Research ethics and the challenge of whole genome sequencing. Nature Reviews Genetics 9, 2008: 152-156.

Caulfield T, McGuire AL, Cho M, Buchanan JA, Burgess MM, Danilczyk U, et al. Research ethics recommendations for whole genome research: Consensus Statement. PLoS Biology 6(3, e73), 2008: 0430-0435.

Wheeler DA, Srinivasan M, Egholm M, Shen Y, Chen L, McGuire AL, et al. The Complete Genome of an Individual by Massively Parallel DNA Sequencing. Nature 452, 2008: 872-876.

McGuire AL. Editorial. 1000 Genomes: On the Road to Personalized Medicine. Personalized Medicine 5, 2008: 1-3.

Voidonikolas G, Gringas MC, Hodges S, McGuire AL, Chen C, Gibbs RA, Brunicardi FC, Fisher WE. Developing a Tissue Resource to Characterize the Genome of Pancreatic Cancer. World Journal of Surgery 33(4), 2009: 723-731.

Fackler J, McGuire AL. Paving the Way to Personalized Genomic Medicine: Steps to Successful Implementation. Current Pharmacogenomics and Personalized Medicine 7(2), 2009: 125-132.

Belmont J, McGuire AL. The Futility of Genomic Counseling: Essential Role of Electronic Health Records. Genome Medicine 1(5), 2009: 48.

Lupski JR, Reid JG, Gonzaga-Jauregui C, Rio Deiros D, Chen DC, Nazareth L, Bainbridge M, Dinh H, Jing C, Wheeler DA, McGuire AL, et al. Whole Genome Sequencing in a Patient with Charcot-Marie-Tooth Neuropathy. New Engl. J. Med. 362(13), 2010: 1181-1191.

Guttmacher AE, McGuire AL, Ponder B, Stefansson K. Personalized Genomic Information: Preparing for the Future of Genetic Medicine. Nature Reviews Genetics 11(2), 2010: 161-165.

Rachul C, McGuire A, Caulfield T. Public Perceptions and Biobanking: What Does the Research Really Say? Studies in Ethics, Law, and Technology 6(1), 2012: Article 3.

Lewis MH, Scheurer ME, Green RC, McGuire AL. Research Results: Preserving Newborn Blood Samples. Science Translational Medicine 4(159), 2012: 159cm12.

Sudmant PH, Kitzman JO, Antonacci F, Alkan C, Malig M, Tsalenko A, Sampas N, Bruhn L, Shendure J, 1000 Genomes Project, Eichler EE. [Collaborator] Diversity of Human Copy Number Variation and Multicopy Genes. Science 330, 2010: 641-646.

1000 Genomes Project Consortium et al. [Collaborator] A Map of Human Genome Variation from Population Scale Sequencing. Nature 467, 2010: 1061-73.

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Meet Our Team

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The Center for Medical Ethics and Health Policy is led by Director Amy L. McGuire, J.D., Ph.D. See listings of our faculty and staff.

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