Recent Publications by CGS Investigators and Trainees

Bailey, D. B., Bishop, E., Raspa, M., & Skinner, D. (2012). Caregiver opinions about fragile X population screening. Genetics in Medicine, 14, 115-121.

Bailey, D. B., Hazlett, H. C., Roberts, J. E., & Wheeler, A. C. (2011). Early development in fragile X syndrome: Implications for developmental screening. In D. Fidler (Ed.), International Review of Research in Intellectual Disabilities: Early Development in Genetic Disorders Associated with Intellectual Disabilities, 40 (pp.75-108). San Diego, CA: Elsevier.

Belsky, D. W., Moffitt, T., E., Houts, R. M., Bennett, G. G., Biddle, A. K., Blumenthal, J. A., Evans, J. P., et al. (in press). Polygenic risk for adult obesity is mediated by rapid childhood growth: Evidence from a 4-decade longitudinal study. Archives of Pediatrics & Adolescent Medicine.

Berg, J. S., Evans, J. P., Leigh, M. W., Omran, H., Bizon, C., Mane, K., Knowles, M. R., Weck, K. E., & Zariwala, M. A. (2011). Next generation massively parallel sequencing of targeted exomes to identify genetic mutations in primary ciliary dyskinesia: Implications for application to clinical testing. Genetics in Medicine, 13(3), 218-229.

Berg, J. S., Khoury, M. J., & Evans, J. P. (2011). Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time. Genetics in Medicine, 13(6), 499-504.

Beskow, L., Namey, E., Miller, P., Nelson, D.K., Cooper, A. (in press). IRB chairs’ perspectives on genotype-driven research recruitment. IRB: Ethics and Human Research.

Beskow, L. M, Namey, E. E., Cadigan, R. J., Brazg, T., Crouch, J., Henderson, G. E., Michie, M., Nelson, D. K., Tabor, H. K., Wilfond, B. S. (2011). Research participants’ perspectives on genotype-driven research recruitment. Journal of Empirical Research on Human Research Ethics, 6(4), 3-20.

Blatt, J., Morrell, D. S., Bucks, S., Zdanski, C., Gold, S., Stavas, J., Powell, C., & Burkhart, C. N. (2011). Beta-blockers for infantile hemangiomas: A single-institution experience. Clinical Pediatrics, 50(8), 757-63.

Buchbinder, M. & Timmermans, S. (2011). Newborn screening and maternal diagnosis: Rethinking family benefit. Social Science& Medicine, 73(7), 1014-1018.

Buchbinder, M. & Timmermans, S. (2011). Medical technologies and the dream of the perfect newborn. Medical Anthropology, 30(1),56-80.

Burke, W. & Evans, J. P. (2011). Teaching with single nucleotide polymorphisms: Learning the right lessons. Genetics in Medicine, 13(1), 17-18.

Burke, W., Tarini, B., Press, N. A., & Evans, J. P. (2011). Genetic screening. Epidemiologic Reviews, 33, 148-164.

Bussey-Jones, J., Garrett, J., Henderson, G., Moloney, M., Blumenthal, C., & Corbie-Smith, G. (2010). The role of race and trust in tissue/blood donation for genetic research. Genetics in Medicine, 12(2), 116-21. NIHMSID: 272900

Cadigan, R. J., Easter, M. M., Dobson, A. W., Davis, A. M., Rothschild, B. B., Zimmer, C., Sterling, R., & Henderson, G. (2011). “That’s a good question”: University researchers’ views on ownership and retention of human genetic specimens. Genetics in Medicine, 13(6), 569-75.

Cadigan, R. J, Michie, M., Henderson, G., Davis, A. M., Beskow, L. M. (2011) The meaning of genetic research results: reflections from individuals with and without a known genetic disorder. Journal of Empirical Research on Human Research Ethics, 6(4), 30-40.

Callier, S., Huss, J. & Juengst, E. (2010) GINA and preemployment criminal background checks. The Hastings Center Report, 40(1), 15-19.

Clayton, E., Smith, M., Fullerton, S., Burke, W., McCarty, C., Koenig, B., McGuire, A. L., Beskow, L. M., Dressler, L., Lemke, A., Ramos, E. M., & Rodriguez, L. (2010). Confronting real time ethical, legal and social issues in the eMERGE (Electronic Medical Records and Genomics) Consortium. Genetics in Medicine, (10), 616-20. PMCID: PMC3090678

Choi, H., Van Riper, M., & Thoyre, S. (in press). Decision making following a prenatal diagnosis of Down syndrome: An integrative review. Journal of Midwifery and Women’s Health.

Conley, J., Cadigan, R. J., Davis, A. M., et al. (in press). The discourse of DNA: Giving informed consent to genetic research. In J. Conley (Ed.), The Travels of Texts in Lay-Legal Communication. Oxford University Press.

Conley, J. M., Mitchell, R., Davis, A. M., Cadigan, R. J., Dobson, A. W., Gladden, R. (in press). A trade secret model for genomic biobanking. Journal of Law, Medicine and Ethics.

Conley, J., Doerr, A., & Vorhaus, D. (2010). Enabling responsible public genomics. Health Matrix: Journal of Law-Medicine, 20, 325.

Conley, J. & Vorhaus, D. (2010). When the grass eats the cows. GeneWatch, 23, 5-6.

Coors, M., Glover, J., Juengst, E., & Sikela, J. (2010). The ethics of using transgenic nonhuman primates to study what makes us human. Nature Reviews Genetics, 11, 658-662. PMCID: PMC2995325

Corbie-Smith, G., Goldmon, M., Roman Isler, M., Washington, C., Ammerman, A., Green, M., & Bunton, A. (2010). Partnerships in health disparities research and the roles of pastors of black churches: Potential conflict, synergy, and expectations. Journal of National Medical Association, 102(9), 823-31. PMCID: PMC3056456

De Marco, M., Cykert, S., Coad, N., Doost, K., Roman Isler, M., Schaal, J., White, B., Young, D., & Corbie Smith, G. (2010) Views on personalized medicine: Do the attitudes of African American and White prescription drug consumers differ? Public Health Genomics, 13(5), 276-83. PMCID: PMC2914357

Dodson, C. H. (2011). Knowledge and attitudes concerning pharmacogenomics among healthcare professionals: A literature review. Personalized Medicine, 8(4), 421–428.

Dodson, C. H. & Lewallen, L. (2011). Nursing students’ perceived knowledge and attitude about genetics. Nurse Education Today, 31(4), 333-339.

Dodson, C.H. & Van Riper, M. (2011). Analysis of clinicians’ attitudes towards pharmacogenomics. Personalized Medicine, 8(5), 533-540.

Dressler, L. G. (in press). Return of research results from pharmacogenomics versus disease susceptibility studies: What’s drugs got to do with it? Invited commentary. Future Medicine.

Dressler, L. G., Smolek, S., Ponsaran, R., Markey, J. M., Starks, H., Gerson, N., Lewis, S., Press, N., Juengst, E., Wiesner, G. L., for the GRRIP Consortium. (in press). IRB perspectives on the return of individual results from genomic research. Genetics in Medicine.

Dreyfus, R. & Evans, J. P. (2011). From Bilski back to Benson: Preemption, inventing around, and the case of genetic diagnostics. Stanford Law Review, 63, 1349-1376.

Edwards, K. L., Lemke, A. A., Trinidad, S. B., Lewis, S. M., Starks, H., Quinn Griffin, M. T., Wiesner, G. L., & The GRRIP Consortium (including Dressler, L.). (2011). Attitudes toward genetic research review: Results from a survey of human genetics researchers. Public Health Genomics, 14(6), 337-45.

Evans, J. P. (2010). The Human Genome Project at 10 years: A teachable moment. Genetics in Medicine, 12(8), 477.

Evans, J. P. (2010). Putting patients before patents. Genetics in Medicine, 12(4), S3-4.

Evans, J. P., Berg, J. S. (2011). Next generation DNA sequencing, regulation and the limits of paternalism. Journal of the American Medical Association, 306(21), 2376-2377.

Evans, J. P., Burke, W., & Khoury, M. J. (2010). The rules remain the same for genomic medicine; the case against “Reverse Genetic Exceptionalism”. Genetics in Medicine, 12(6), 342-343.

Evans, J. P., Dale, D. C., & Fomous, C. (2010). Preparing for a consumer-driven genomic age. New England Journal of Medicine, 363 (12), 1099.

Evans, J. P., Meslin, E.M., Marteau, T. M., & Caulfield, T. (2011). Deflating the genomic bubble. Science, 331, 861.

Evans, J. P. & Rothschild, B. B. (in press). Return of results – Not that complicated? Genetics in Medicine.

Fortson, W. S., Kayarthodi, S., Fujimura, Y., Xu, H., Matthews, R., Grizzle, W. E., Rao, V. N., Bhat, G. K., Shyam, E., & Reddy, P. (2011). Histone deacetylase inhibitors, valproic acid and trichostatin-A induce apoptosis and affect acetylation status of p53 in ERG-positive prostate cancer cells. International Journal of Oncology, 39(1), 111-9.

Fortson, W. S. (2010). In person: Studying the implications of new medical technologies. Science Career Magazine. doi:10.1126/science.caredit.a1000051

Funkhouser, W. K., Lubin, I. M., Monzon, F. A., Zehnbauer, B. A., Evans, J. P., Ogino, S., Nowak, J. A. (in press). Relevance, pathogenesis, and testing algorithm for mismatch repair-defective colorectal carcinomas: A report of the Association of Molecular Pathology. Journal of Molecular Diagnostics.

Gert, B. & Davis, A. M. (in press). Ethical impact of genetic research. In B. Caldis (Ed.), Encyclopedia of Philosophy and the Social Sciences. Thousand Oaks, CA: Sage Publications.

Green, R. C., Berg, J. S., Berry, G. T., Biesecker, L. G., Dimmock, D., Evans, J. P. et al. (in press). Exploring concordance and discordance for return of incidental findings from clinical sequencing. Genetics in Medicine.

Hall, M. A. & King, N.M.P. (2010). Legal methods. In J. Sugarman & D. P. Sulmasy (Eds.), Methods in Medical Ethics (2nd ed). Washington, DC: Georgetown University Press.

Hall, M. A., King, N. M. P., Perdue, L. H., Hilner, J. E., Alkolar, B., Greenbaum, C. J., & McKeon, C. (2010). Biobanking, consent, and commercialization in international genetics research: The Type 1 Diabetes Genetics Consortium. Clinical Trials, 7(1), S33-45. PMCID: PMC2917846

Hammond, W. P., Matthews, D., & Corbie-Smith, G. (2010). Psychosocial factors associated with routine health examination scheduling and receipt among African American men. Journal of the National Medical Association, 102(4), 276-89. PMCID: PMC2865157

Henderson, G. (2011). Is Informed Consent Broken? American Journal of Medical Science, 342 (4), 267-72.

Hsiao, C. & Van Riper, M. (in press). Family demands, social support, and family functioning in Taiwanese families rearing children with Down syndrome. Journal of Intellectual Disability Research.

Hsiao, C. & Van Riper, M. (2011). Individual and family adaptation in Taiwanese families living with Down syndrome. Journal of Family Nursing, 17(2), 182-201.

Hsiao, C., & Van Riper, M. (2010). Research on caregiving in Chinese families living with mental illness: A critical review. Journal of Family Nursing, 16, 68-100.

Hsiao, C. & Van Riper, M., Lee, S. H., Chen, S. J., & Lin, S. C.  (2011). Taiwanese nursing students’ perceived knowledge and clinical comfort with genetics. Journal of Nursing Scholarship. 43(2), 125-132.

Howard, D., Boyd, C., Nelson, D. K., & Godley, P. (2010). Getting from A to IRB: Developing an Institutional Review Board at a historically black university. Journal of Empirical Research on Human Research Ethics, 5(1), 75-81.

Iltis, A. S., & King, N. M. P. (Eds.) (in press). Research ethics: Reexamining key concerns. Journal of Law, Medicine, and Ethics.

International Cancer Genome Consortium. (including Dressler, L., Ethics and Policy Committee). (2010). International network of cancer genome projects. Nature, 464(7291), 993-998. PMCID: PMC2902243.

Irvin, W. J., Walko, C. M., Dees, C., Ibrahim, J. G., Chiu, W. K., Moore, S. G., Olajide, O. A., Graham, M. L., Canale, S. T., Raab, R. E., Corso, S., Weck, K., Peppercorn, J. M., Anderson, S., Friedman, K. J., Ogburn, E., Desta, Z., Flockhart, D. A., McLeod, H. L., Evans, J. P., & Carey, L. A. (2011). Multicenter study of genotype-guided tamoxifen dosing increases active metabolite exposure in women with reduced CYP2D6 metabolism. Journal of Clinical Oncology, 29(24), 3232-3239.

Jenerette, C. M. & Brewer, C. A. (in press). SBAR may benefit individuals who frequent emergency Departments: Adults with sickle cell disease. Journal of Emergency Medicine.

Jenerette, C. M. & Brewer, C. A. (2010). Health-related stigma in young adults with sickle cell disease. The Journal of the National Medical Association, 102(11), 1050-1055. NIHMSID: NIHMS293938

Kemper, A., Brewer, C., & Singh, R. (2010). Perspectives on dietary adherence among women with inborn errors of metabolism. Journal of the American Dietetic Association, 110(2), 247-252.

Kent, A., King, N. M. P., & Cohen-Haguenauer, O. (2011).Toward a proportionate regulatory framework for gene transfer: A patient group-led initiative. Human Gene Therapy, 22, 126-134. PMCID: PMC Journal – In Process

Khleif, S. H., Doroshow, J., Hait, W. N. for the AACR-FDA-NCI Cancer Biomarkers Collaborative (including Dressler, L.). (2010). AACR-FDA-NCI Cancer Biomarkers Collaborative Consensus Report: Advancing the use of biomarkers in cancer drug development. Clinical Cancer Research, 16(13), 3299-318. NIHMSID: NIHMS208028

Khoury, M. J., Bowen, M. S., Burke, W., Coates, R. J., Dowling, N. F., Evans, J. P., Reyes, M., St. Pierre, J. (2011). Current priorities for public health practice in addressing the role of human genomics in improving population health. American Journal of Preventive Medicine, 40(4), 486-493.

Khoury, M. J., Coates, R. J., Evans, J. P. (2010). Evidence-based classification of recommendations on use of genomic tests in clinical practice: Dealing with insufficient evidence. Genetics in Medicine, 12, 680-3.

Khoury, M. J., Evans, J. P., Burke, W. (2010). A reality check for personalized medicine (commentary). Nature, 464, 680.

Kimani, J. W., Buchman, C. A., Booker, J. K., Huang, B. Y., Castillo, M., Powell, C. M., & Weck, K. E. (2010). Sensorineural hearing loss in a pediatric population: association of congenital cytomegalovirus infection with intracranial abnormalities. Archives of Otolaryngology Head and Neck Surgery, 136(10), 999-1004.

King, N. M. P., Coughlin, C. N., & Atala, A. (2011). Pluripotent stem cells: The search for the “perfect” source. Minnesota Journal of Law, Science & Technology, 12, 715-730.

King, N. M. P., Coughlin, C., & Furth, M. (2010). Ethical issues in regenerative medicine. Wake Forest Intellectual Property Law Journal, 9, 215-237.

King, N. M. P. & Hyde, M. J (Eds.). (2012). Bioethics, Public Moral Argument, and Social Responsibility. Routledge.

Lemke, A., Trinidad, S., Edwards, K., Starks, H., Wiesner, G., & the GRRIP Consortium (including Dressler, L. & Juengst, E.) (2010). Attitudes toward genetic research review: Results from a national survey of professionals involved in human subjects protection. Journal of Empirical Human Research Ethics, 5(1), 83-91. PMCID: PMC2902178

McGuire, A. L., Basford, M., Dressler, L. G., Fullerton, S. M., Koenig, B. A., Li, R., McCarty, C. A., Ramos, E., Smith, M. E., Somkin, C. P., Waudby, C., Wolf, W. A., & Clayton, E. W. (2011). Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience. Genomic Research, 21(7), 1001-7.

Mehlman, M., Berg, J., Juengst, E., & Kodish, E. (2011). Ethical and legal issues in enhancement research on human subjects. Cambridge Quarterly of Healthcare Ethics 20(1), 30-46.

Michie, M., Henderson, G., Garrett, J., & Corbie-Smith, G. (2011). “If I could in a small way help”: Motivations for and beliefs about sample donation for genetic research. Journal of Empirical Research on Human Research Ethics, 6(2), 57-70.

Michie, M. & Skinner, D.(2010). Finding religion in life stories: Answering the “why?” of FXS. National Fragile X Quarterly, 38 (14-15), 24.

Michie, M. & Skinner, D. (2010). Narrating disability, narrating religious practice: Reconciliation and fragile X syndrome. Intellectual and Developmental Disabilities, 48(2), 99-111.

Miles, M. S., Roman Isler, M., Banks, B., Sengupta, S., & Corbie-Smith, G. (2011). African Americans living with HIV in the rural south: Silent endurance and suffering. Qualitative Health Research, 21(4), 489-507. PMCID: PMC3073239

Mitchell, R., Conley, J. M., Davis, A. M., Cadigan, R. J., Dobson, A.W., & Gladden, R. (2011). Genomics, biobanks, and the trade secret model. Science, 332,309-310.

Morrissey, C. & Walker, R. L. (in press). Funding and forums for ELSI research: Who (or what) is setting the agenda? American Journal of Bioethics Primary Research.

Neklason, D. W., Kerber, R., Nilson, D., Anton-Culver, H., Schwartz , A.G., Griffin, C. A., Ahnen, D., Schildkraut, J., Evans, J. P., Tomlinson, G., Strong, L., Miller, A. R., Stopfer, J., Finkelstein, D., Nakdarni, P., Kasten, C., Mineau, G., & Burt, R. (in press). Common familial colorectal cancer linked to chromosome 7q31: A genome wide-analysis. Cancer Research.

Nelson, D. K. (2010). IRB member conflict of interest. In E. A. Bankert & R. J. Amdur (Eds.), Institutional Review Board Member Handbook (3rd edition).Sudbury, MA: Jones and Bartlett Publishers.

Nelson, D. K., & Amdur, R. J. (2010). Researcher conflict of interest. In E. A. Bankert & R. J. Amdur (Eds.), Institutional Review Board Member Handbook (3rd edition). Sudbury, MA: Jones and Bartlett Publishers.

O’Brien, K., Cole, S. R, Tse, C., Perou, C., Carey, L., Foulkes, W. D., Dressler, L. G.,Geradts, J., & Millikan, R. C. (2010). Intrinsic breast cancer subtypes, race and long-term survival in the Carolina Breast Cancer Study. Clinical Cancer Research, 16(24), 6100-10. PMCID: PMC3029098

Peppercorn, J., Shapira, I., Deshields, T., Kroetz,D., Friedman, P., Spears, P., Collyar, D., Shulman, L. N., Dressler, L., Bertagnolli, M. M. (in press). Ethical aspects of participation in the database of genotypes and phenotypes (dbGaP) of the National Center for Biotechnology Information (NCBI): The CALGB experience. Cancer.

Prows, C., Hopkin, R., Barnoy, S., & Van Riper, M. (in press). An update of childhood genetic disorders. Journal of Nursing Scholarship.

Rakhra-Burris, T. K., Auman, J. T., Deverka, P., Dressler, L. G., Evans, J. P., Goldberg, R. M., Havener, T. M., Hoskins, J. M., Jonas, D. E., Long, K. M., Motsinger-Reif, A. A., Irvin, W. J., Richards, K. L., Roederer, M. W., Valgus, J. M., Riper, M., Vernon, J. A., Zamboni, W. C., Wagner, M. J., Walko, C. M. E., Weck, K., Wiltshire, T., & McLeod, H. L. (2010). Institutional profile: UNC Institute for Pharmacogenomics and Individualized Therapy: Interdisciplinary research for individual care. Pharmacogenomics, 11(1), 13-21.

Raspberry, K. & Skinner, D. (2011). Negotiating desires and options: How mothers who carry the fragile X gene experience reproductive decisions. Social Science and Medicine, 72, 992-998. PMCID: PMC3070848

Raspberry, K. & Skinner, D. (2011). Enacting genetic responsibility: Experiences of mothers who carry the fragile X gene. Sociology of Health and Illness, 33(3), 420-433. PMCID: PMC3057279

Roederer, M., Van Riper, M., Valgus, J., Knafl, G., & McLeod, H. (2012). Knowledge, attitudes, and education of pharmacists in North Carolina regarding pharmacogenetic testing. Personalized Medicine, 9, 19-27.

Sengupta, S., Strauss, R., Miles, M., Roman Isler, M., Banks, B., & Corbie-Smith, G. (2010). Conceptual model exploring the relationship between HIV stigma and implementing HIV clinical trials in rural communities of North Carolina. North Carolina Medical Journal, 71(2), 113-122. PMCID: PMC3037544

Skinner, D., Choudhury, S., Sideris, J., Guarda, S., Buansi, A., Roche, M., Powell, C., & Bailey, D. B. (2011). Parents’ decisions to screen newborns for FRM1 gene expansions in a pilot research project. Pediatrics, 127(6), 1455-1463. PMCID: PMC Journal - In Process

Spencer, D. H., Lockwood, C., Topol, E., Evans, J. P., Green, R. C., Mansfield, E., Tezak, Z. (2011). Direct to consumer genetic testing: Reliable or risky? Clinical Chemistry, 57(12), 1-4.

Therrell, B. L., Hannon, W. H., Bailey, D. B., Goldman, E. G., Monaco, J., Norgard-Pedersen, B., Terry, S. F., Harris, A., Vasquez, L. M., Johnson, A., Lloyd-Puryear, M. A., & Howell, R. (in press). Committee report: Considerations and recommendations for national guidance regarding the retention and use of residual dried blood spot specimens after newborn screening. Genetics in Medicine.

Timmermans, S. & Buchbinder, M. (in press). Saving Babies? The Consequences of Newborn Genetic Screening. University of Chicago Press.

Timmermans, S. & Buchbinder, M. (2012). Expanded newborn screening: Articulating the ontology of diseases with bridging work in the clinic. Sociology of Health and Illness, 34(2), 208-220.

Timmermans, S. & Buchbinder, M. (2010). Patients in waiting: Living between sickness and health in the genomics era. Journal of Health and Social Behavior, 51(4), 408-423.

Torrone, E. A., Levandowski, B. A., Thomas, J. C., Isler, M. R., & Leone, P. A. (2010) Identifying gaps in HIV prevention services. Social Work Public Health, 25(3), 327-40.

Trees, A., Koenig Kellas, J., & Roche, M. I. (2010). Narrative theory. In C. Gaff & C. Bylund, (Eds.), Talking about Genetics: A Family Affair. Oxford Press.

Van Riper, M. (in press). Changing landsape of prenatal testing: ethical and social implications for families. The American Journal of Maternal/Child Nursing.

Van Riper, M. (2012). Genetics. In D. Lowdermilk & S. Perry (Eds.), Maternity and women’s health care (10th ed.) (pp.43-59). Philadelphia: Elsevier Science.

Van Riper, M. (2011). Family nursing and genomics in the 21st Century. In E. K. Svavarsdóttir & H. Jonsdottir (Eds.), Family nursing in action (69-83). Revkajavik:University Press of the University of Iceland.

Van Riper, M. (2011). Down Syndrome and the family. In M. Croft (Ed), Encyclopedia of family health. (pp. 335-337). Thousand Oaks, California: Sage.

Van Riper, M. (2011). Genetic conditions – experiences of families during the prediagnosis and diagnosis phase. In M. Croft (Ed.), Encyclopedia of family health (pp. 526-529). Thousand Oaks, California: Sage.

Van Riper, M. (2010). Genomics and the family: Integrative frameworks. In K.P. Tercyak (Ed.) Handbook of genomics and the family (pp. 109-140). New York: Springer.

Van Riper, M., & Choi, H. (2011) Family-provider interactions surrounding the diagnosis of Down Syndrome. Genetics in Medicine, 13,714-16.

Walker, R. L. (2010). Virtue ethics and medicine. Lahey Clinic Journal of Medical Ethics,17(3), 1-2.

Walker R. L. & King, N. M. P. (2011). Biodefense research and the U.S. regulatory structure: Whither nonhuman primate moral standing? Kennedy Institute of Ethics Journal, 21, 277-310.

Walker, R. L. & Morrissey, C. (2012). Charting ELSI’s future course: Lessons from the recent past. Genetics in Medicine, 14(2), 259-267.

Wolff, D. J., Van Dyke, D. L., & Powell, C. M. (2010). Working Group of the ACMG Laboratory Quality Assurance Committee: Laboratory guideline for Turner syndrome. Genetic Medicine, 12(1), 52-5.