Elger, B.S., and Caplan, A.L. (2006). Consent and anonymization in research involving biobanks: Differing terms and norms present serious barriers to an international framework. European Molecular Biology Organization Reports, 7(7), 661–666.

Epel, E.S., Blackburn, E.H., Lin, J., Dhabhar, F.S., Adler, N.E., Morrow, J.D., and Cawthon, R.M. (2004). Accelerated telomere shortening in response to life stress. Proceedings of the National Academy of Sciences, 101(49), 17,312–17,315.

Eriksson, S., and Helgesson, G. (2005). Potential harms, anonymization, and the right to withdraw consent to biobank research. European Journal of Human Genetics, 13(9), 1,071–1,076

Faden, R.R., and Beauchamp, T.L. (1986). A History and Theory of Informed Consent. New York: Oxford University Press.

Fost, N., and Levine, R.J. (2007). The dysregulation of human subjects research. Journal of the American Medical Association, 298(18), 2,196–22,198.

Greely, H.T. (1997). The control of genetic research: Involving the groups between. Houston Law Review, 33(5), 1,397–1,430.

Greely, H.T. (1999). Breaking the stalemate: A prospective regulatory framework for unforeseen research uses of human tissue samples and health information. Wake Forest Law Review, 34(3), 737–766.

Greely, H.T. (2007). The uneasy ethical and legal underpinnings of large-scale genomic biobanks. Annual Review of Genomics and Human Genetics, 8, 343–364.

Greely, H.T. (2009). Collecting biomeasures in the PSID: Ethical and legal concerns. Biodemography and Social Biology, 55(2), 270–288.

Hao, K., Li, C., Rosenow, C., and Hung Wong, W. (2004). Estimation of genotype error rate using samples with pedigree information: An application on the GeneChip Mapping 10K array. Genomics, 84(4), 623–630.

Hauser, R. M., and Weir, D. (in press). Recent developments in longitudinal studies of aging in the United States. Submitted to Demography.

Homer, N., Szelinger, S., Redman, M., Duggan, D., Tembe, W., Muehling, J., Pearson, J.V., Stephan, D.A., Nelson, S.F., and Craig, D.W. (2008). Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLoS Genetics, 4(8), e1000167.

Huizinga, D., Haberstick, B.C., Smolen, A., Menard, S., Young, S.E., Corley, R.P., Stallings, M.C., Grotpeter, J., and Hewitt, J.K. (2006). Childhood maltreatment, subsequent antisocial behavior, and the role of monoamine oxidase A genotype. Biological Psychiatry, 60(7), 677–683.

Institute of Medicine. (2009). Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research. S.J. Nass, L.A. Levit, and L.O. Gostin, Eds, Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule. Board on Health Sciences Policy and Board on Health Care Services. Washington, DC: The National Academies Press.

International Society for Biological and Environmental Repositories. (2005). Best practices for repositories I: Collection, storage, and retrieval of human biological materials for research. Cell Preservation Technology, 3(1), 5–48.

International Society for Biological and Environmental Repositories. (2008). 2008 best practices for repositories: Collection, storage, retrieval, and distribution of biological materials for research. Cell Preservation Technology, 6(1), 3–58.

Jones, N.L., and Sarata, A.K. (2008). Genetic Information: Legal Issues Relating to Discrimination and Privacy. CRS Report for Congress. Washington, DC: Congressional Research Service.

Kapp, M.B. (2008). Biobanking human biological materials: Issues surrounding the collection of samples for use in future research. Pharmaceutical Medicine, 22(2), 75–84.

Karr, A.F., Kohnen, C.N., Oganian, A., Reiter, J.P., and Sanil, A.P. (2006). A framework for evaluating the utility of data altered to protect confidentiality. American Statistician, 60(3), 224–232.

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