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Publications
  • Bailey, D. (in press) Newborn screening for intellectual disability: Past, present, and future. Invited chapter submitted to L. M. Glidden (Ed.), International Review of Research in Mental Retardation, Volume 36. San Diego: Elsevier.
  • Bailey, D., Armstrong, D., Kemper, A., Skinner, D., & Warren, S. (in press). Supporting family adaptation to pre-symptomatic and “untreatable” conditions in an era of expanded newborn screening. Journal of Pediatric Psychology
  • Bailey, D., Skinner, D., Davis, A., Whitmarsh, I., and Powell, C. (2008) Ethical, legal, and social concerns about expanded newborn screening: Fragile X syndrome as a prototype for emerging issues. Pediatrics, 121(3), e693-e707.
  • Bailey, D. B., Beskow, L. M., Davis, A., & Skinner, D. (2006). Changing perspectives on the benefits of newborn screening. Mental Retardation and Developmental Disabilities Research Reviews, 12(4), 270-9.
  • Bailey, D. B., Skinner, D., & Warren, S. F. (2005). Newborn screening for developmental disabilities: Reframing presumptive benefit. American Journal of Public Health, 95, 1889-1893.
  • Ball, J., Van Riper, M., Engstrom, E., & Matheson, J. (2005). Incidental finding of ultrasound markers of Down syndrome in the second trimester of pregnancy: a case study. Journal of Midwifery and Women’s Health, 50, 243-245.
  • Bolnick, D. A., Fullwiley, D., Duster, T., Cooper, R. S., Fujimura, J. H., Kahn, J., Kaufman, J. S., Marks, J., Morning, A., Nelson, A., Ossorio, P., Reardon, J. Reverby, S. M., and TallBear, K. (2007). The Science and Business of Genetic Ancestry Testing. Science, 318, 399-400.
  • Churchill, L. R., Nelson, D. K., Henderson, G. E., et al. (2003). Assessing benefits in clinical research: Why diversity in benefit assessment can be risky. IRB: Ethics and Human Research, 25, 1-8.
  • Conley, J. and Moriarty, J. (2007). Scientific and expert evidence. Aspen Publishers.
  • Cooper, R. S., Kaufman, J. S., Ward, R. (2003). Race and genomics. New England Journal of Medicine, 348(12), 1166-1170 (Comments and Rejoinder: New England Journal of Medicine, 348(25), 2581-2; New England Journal of Medicine, 348(12),1081-2.
  • Corbie-Smith, G., Blumenthal, C., Henderson, G.E., Garrett, J., Bussey-Jones, J., Moloney, M.E., Sandler, R.S., Williams Lloyd, S., Dorrance, J., Darter, J. (in press). Studying genetic research participants: Lessons from the “Learning About Research in North Carolina” study. Cancer Epidemiology, Biomarkers & Prevention.
  • Corbie-Smith, G., Moody-Ayers, S., Thrasher, A. (in press). Closing the circle: Minority inclusion in research and reduction of health disparities. Archives of Internal Medicine.
  • Cuskelly, M., Hauser-Cram, P., & Van Riper, M. (in press). Families of children with Down syndrome: What we know and what we need to know. Down Syndrome Research and Practice.
  • Dressler, L. G. (2007). Control and Use of Banked Human Specimens in Research. Biospecimen “Ownership.” Counterpoint Journal of Cancer Epidemiology, Prevention and Biomarkers, 16, 2, 190-191.
  • Dressler, L. G., & Juengst, E. (2006). Thresholds and boundaries in the disclosure of individual genetic research results. American Journal of Bioethics, 6, 18-20.
  • Dressler, L. G. (2005). Human Specimens, Cancer Research and Drug Development: How Science Policy can Promote Progress and Protect Research Participants. Invited Background Paper. National Cancer Advisory Board of the Institutes of Medicine (IOM). Available at: http://www.iom.edu/Object.File/Master/26/207/IOM_fnl.pdf.
  • Easter, M., Henderson, G., Davis, A., Churchill, L., King, N. (in press). The many meanings of care in clinical research. Reprinted in R. DeVries, L. Turner, K. Orfali & C. Bosk (Eds.), The view from here: Social science and bioethics, Oxford, UK: Blackwell Publishing Ltd.
  • Evans, J. P. (2007). Healthcare in the age of genetic medicine. The Journal of the American Medical Association, 298(22), 2670-2672.
  • Finkler, K., Skrzynia, C., & Evans, J. P. (2003). The new genetics and its consequences for family, kinship, medicine, and the new genetics. Social Science and Medicine, 57(3), 403-12.
  • Hayes, D., Thor, A., Dressler, L., Weaver, D., Edgerton, S., Cowan, D., Broadwater, G., Goldstein, L., Martino, S., Ingle, J., Henderson, I.C., Norton, L., Winer, E., Hudis, C., Ellis, M., and Berry, D. (2007) HER2 and Response to Paclitaxel in Node-Positive Breast Cancer. New England Journal of Medicine, 357(15), 1496-1506.
  • Henderson, G. E. (in press). Introducing social and ethical perspectives on genetics research to sociologists engaged in gene environment research. Sociological Methods and Research.
  • Henderson, G. E., Garrett, J., Bussey-Jones, J., Moloney, M. E., Blumenthal, C., Corbie-Smith, G. (in press). Great expectations: Views of genetic research participants regarding current and future genetic studies. Genetics in Medicine.
  • Henderson, G. E., Churchill, L. R., Davis, A. M., Easter, M. M., Grady, C., Joffe, S., Kaas, N., King, N. M. P., Lidz, C. W., Miller, F. G., Nelson, D. K., Peppercorn, J., Rothschild, B. B., Sankar, P., Wilfond, B. S., Zimmer, C. R. (2007). Clinical trials and medical care: Defining the therapeutic misconception. Public Library of Science- Medicine, 4 (11), 1735-1738.
  • Henderson, G. E., Mahoney, D., Corneli, A., Nelson, D. K. and Mwansambo, C. (2007). Applying research ethics guidelines: The view from a sub-Saharan research ethics committee. Journal of Empirical Research on Human Research Ethics, 2(2), 41-48.
  • Henderson, G. E., Easter, M. M., Zimmer, C., King, N. M. P., Davis, A., Rothschild, B., Churchill, L., Wilfond, B., & Nelson, D. (2006). Therapeutic misconception in early phase gene transfer trials. Social Science and Medicine, 62, 239-53.
  • Henderson, G. E., Davis, A. M., King, N. M. P., Easter, M. E., Zimmer, C. R., Rothschild, B. B., Wilfond, B. S., Nelson, D. K., Churchill, L. R. (2004). Uncertain Benefit:  Investigators' views and communications in early phase gene transfer trials. Molecular Therapy, 10, 225-231.
  • Henderson, G. E. & King, N. M. P. (2001). Studying benefit in gene transfer research. IRB: Ethics and Human Research, 23(2), 13-15.
  • Jewell, S. D., Monovich, L. C., Edgerton, S., Schilksy, R. and Dressler, L. G. (2006). Biospecimen Banking, Standardization and Lessons Learned from the Cancer and Leukemia Group B Pathology Coordinating Office. Seminars in Breast Disease, 8, 2, 93-99.
  • Kaufman, J. S. (in press). Epidemiologic analysis of racial/ethnic disparities: Some fundamental issues and a cautionary example. 2008 Social Science and Medicine.
  • Kaufman, J.S. and Cooper, R. S. (2008). Race in epidemiology: new tools, old problems. Annals of Epidemiology, 18(2), 119-123.
  • Kaufman, J. S. & Hall, S., A. (2003). The slavery hypertension hypothesis: dissemination and appeal of a modern race theory. Epidemiology, 14(1), 111-126.
  • King, N. M. P. (in press). Genes and TS: What will they tell us? Scientific, ethical, and social implications. In Walkup, J. (ed.): AIN: Tourette Syndrome. Lippincott Williams & Wilkins.
  • King, N. M. P. (in press). The glass house: Assessing bioethics. In The ethics of bioethics. Eckenwiler, L., and Cohn, F. (Eds). Johns Hopkins University Press.
  • King, N. M. P., & Churchill, L. R. (in press). Assessing and comparing potential benefits and risks of harm. In Oxford Textbook of Clinical Research Ethics, Emanuel, E., Wendler, D., and Crouch, R. (Eds.). Oxford University Press.
  • King, N. M. P. (2007). The Ethics of Genetic Testing: Is more always better? North Carolina Medical Journal, 68 (2).
  • Landsman, G. & Van Riper, M. (2007). Family, household, and social context of bring up children with special health care needs. In E.J. Sobo, K. Dennis, & P.S. Kurtin (Eds.) Optimizing care for children with special health care needs in their early years. Maryland: Paul H. Brookes Publishing, Inc.
  • Li, T., Lange, L. A., Li, X., Susswein, L., Bryant, B., Malone, R., Lange, E., Huang, T-Y, Stafford, D. & Evans, J. P. (2006). Polymorphisms in the VKOR gene are strongly associated with warfarin dosage requirements in patients receiving anticoagulation. Journal of Medical Genetics, 43(9), 740-744.
  • Lynn, M. R. & Nelson, D. K. (2005). Common (mis)perceptions about IRB review of human subjects research. Nursing Science Quarterly, 16, 264-270.
  • Marsh, S., & McLeod, H. L. (2006). Pharmacogenomics: From bedside to clinical practice. Human Molecular Genetics, 15, R89-93.
  • McKelvey, K. & Evans, J. P. (2003). Cancer genetics in the primary care setting. Journal of Nutrition, 133, 3767S-3772S.
  • Millikan, R., Eaton, A., Worley, K., Biscocho, L., Hodgson, E., Hunag, W., Geradts, J., Iacocca, M., Cowan, D., Conway, K. and Dressler, L. G. (2003). HER2 codon 655 polymorphism and risk of breast cancer in African American and whites. Breast Cancer Res and Treatment, 70, 355-364.
  • Moorman, P., Calingaert, B., Evans, J. P., Hoyo, C., Newman, B., Skinner, C., Sorenson, J., Schildkraut, J. (2004). Racial differences in enrollment in a cancer genetics registry. Cancer Epidemiology, Biomarkers and Prevention, 13(8), 1349-1354.
  • Nelson, D. K. (2006). Conflict of Interest (three chapters). In: EA Bankert and RJ Amdur, eds. Institutional Review Board: Management and Function (2nd ed.) Sudbury, MA: Jones and Bartlett Publishers.
  • Nelson, D. K. & Amdur, R. J. (2006). Researcher conflict of interest. In: EA Bankert and RJ Amdur, eds. Institutional Review Board Member Handbook (2nd ed.), Sudbury, MA: Jones and Bartlett Publishers.
  • Raspberry, K., & Skinner D. (2007). Experiencing the genetic body: Parents’ encounters with pediatric clinical genetics. Medical Anthropology, 26, 355-391.
  • Rothschild, B. B., Estroff, S. E., & Churchill, L. R. (2005). The cultural calculus of consent. Clinical Obstetrics and Gynecology, 48(3), 574-94.
  • Schaffer, R., Kuczynski K., & Skinner, D. (2008). Producing genetic knowledge and citizenship through the Internet: Mothers, pediatric genetics, and cybermedicine. Sociology of Health and Illness, 30 (1), 145-149.
  • Skinner, D. (in press). Interdisciplinary research. In L. Given (Ed.), Sage Encyclopedia of Qualitative Research Methods. Sage Publications.
  • Skinner, D. & Weisner, T. (2007). Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13, 302-312.
  • Skinner, D., & Schaffer, R. (2006). Families and genetic diagnoses in the genomic and Internet age. Infants & Young Children, 19, 16-24.
  • Skinner, D. & Weisner, T. (2007). Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews (13), 302-312.
  • Sterling, R., Henderson, G., & Corbie-Smith, G. (2006). Public willingness to participate in and public opinions about genetic variation research: A review of the literature. American Journal of Public Health, 96, 1971-1978.
  • Susswein, L., Skrzynia, C., Lange, L., Booker, J., Graham III, M., Evans, J. P. (2008). Increased uptake of BRCA1/2 genetic testing among african american women with a recent diagnosis of breast cancer. Journal of Clinical Oncology, 26, 32-36.
  • Torke, A. M., Corbie-Smith, G., & Branch, W. T. (in press). African American patients’ perspectives on medical decision making. Archives of Internal Medicine.
  • Van Riper, M. (2007). Book Review: Miller, S.M. McDaniel, S.H., Rolland, J.S., & Feetham, S.L. (Eds.). (2007). Individuals, families, and the new era of genetics: Biopsychosocial perspectives. Journal of Family Nursing, 13, 388-390.
  • Van Riper, M. (2007). Families of children with Down syndrome: Responding to a “change of plans” with resilience. Journal of Pediatric Nursing, 22, 116-128.
  • Van Riper, M. (2007). Genetics. In D. Lowdermilk & S. Perry (Eds.), Maternity and women’s health care (9th ed.). Philadelphia: Elsevier Science.
  • Van Riper, M. (2006). Ethical, legal, and social implications. In M. S. Runge & W. C. Patterson (Eds.), Principles of molecular medicine. (pp. 61-68). Totowa, NJ: Humana Press Inc.
  • Van Riper, M. (2006). Family nursing in the era of genomic health care: We should be doing so much more! Journal of Family Nursing, 12, 111-118.
  • Van Riper, M. (2005). Genetic testing and the family. Journal of Midwifery and Women’s Health, 50, 227-233.
  • Van Riper, M., & Gallo, A. (2005). Family, health, and genomics. In D. R. Crane & E. S. Marshall (Eds.), Handbook of Families and Health: Interdisciplinary Perspectives. Thousand Oaks: Sage Publications Inc.
  • Van Riper, M. (2004). Genetics. In L. Davis (Ed.), Cardiovascular Nursing Secrets. Chapter 46. (pp. 503-510). Philadelphia: Elsevier Science
  • Van Riper, M. (2004). What families need to thrive. Down Syndrome News, 27, 18-22.
  • Van Riper, M., & McKinnon, W. (2004). Genetic testing for breast and ovarian cancer susceptibility: A family experience. Journal of Midwifery and Women’s Health, 49, 210-219.
  • Walker, R. L., & Ivanhoe, P. J. (Eds.). (2007). Working Virtue: Virtue Ethics and Contemporary Moral Problems. Oxford, UK: Oxford University Press.
  • Wheeler, A., Skinner, D., & Bailey, D. B. (in press). Perceived quality of life in mothers of children with fragile X syndrome. American Journal on Mental Retardation.
  • Whitmarsh, I. A. (In press). Biomedical Ambiguity: Race, Asthma, and the Contested Meaning of Genetic Research in the Caribbean. Cornell University Press.
  • Whitmarsh, I. A., Davis, D., Skinner, D., & Bailey, D. (2007). A place for genetic uncertainty: Parents valuing the unknown meanings of disease. Social Science and Medicine, 65, 1082-1093.
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The Center for Genomics and Society is supported by the ELSI Research Program of the National Human Genome Research Institute of the National Institutes of Health, Grant Number P50HG004488.