Arlene Davis


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Newborn Screening

Research Ethics Consultation Service


	*Arlene Davis*

Arlene M Davis, JD, RN is an attorney and Assistant Professor of Social Medicine in the School of Medicine at UNC-CH. Dr. Davis’s teaching and research interests center on clinical and research ethics and draw upon her prior experience in private practice and in pediatric and public health nursing. She has been co-investigator on a series of grants from NHGRI’s ELSI Program, including an historical, ethical, and legal analysis and reevaluation of policy where she focused on the federal regulatory framework of human subject protection and the case law of informed consent, and a six year study examining understandings of benefit and of vulnerable populations enrolled in early phase gene transfer research. More recently, with funding from the NICHD and NIHGRI, she is conducting research regarding the creation, understanding, and dissemination of genetic information through genetic screening and biobanking. In other legal research and in conjunction with the School of Government, she co-directed a 10-year project examining the legal issues facing pregnant and parenting adolescents in North Carolina, an effort that produced four widely distributed legal guides, maintains an active web site, and informed North Carolina law regarding pregnant and parenting teens in its 2006 state legislative session. Dr. Davis has served as an IRB member and consultant to the Research Triangle Institute IRB for over 10 years. She is a Fellow at the UNC Parr Center of Ethics, a member of the UNC Hospitals Ethics Committee, and Director of Ethics Education for that Committee. Dr. Davis teaches graduate students in medicine, law, and nursing on various topics, including issues of clinical and research ethics and health care law.


	*Related Publications*

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.

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.

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.

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.

Easter, M., Henderson, G., Davis, A., Churchill, L., King, N. (forthcoming). The Many Meanings of Care in Clinical Research. Sociology of Health and Illness, 28 (6); [and] in The View From Here: Social Science and Bioethics, edited by Raymond DeVries, Leigh Turner, Kristina Orfali, and Charles Bosk (Oxford, UK: Blackwell Publishing Ltd. and Sociology of Health and Illness).

Henderson, G., Easter, M., Zimmer, C., King, N., Davis, A., Rothschild, B., Churchill, L., Wilfond, B., Nelson, D. (2006). Therapeutic Misconception in Early Phase Gene Transfer Trials. Social Science & Medicine, 62 (1), 239-253. Epub 2005 Jul 5.

King, N., Henderson, G., Churchill, L., Davis, A., Hull, S., Nelson, D., Parham-Vetter, P., Rothschild, B., Easter, M., Wilfond, B. (2005). Consent Forms and the Therapeutic Misconception: The Example of Gene Transfer Research. IRB: Ethics and Human Research, 27 (1), 1-8.

Henderson, G., Davis, A., King, N. (2004). Vulnerability to Influence - A Two-Way Street. American Journal of Bioethics, 4 (3), 50-51.

Henderson, G., Davis, A., King, N., Easter, M., Zimmer, C., Rothschild, B., Wilfond, B., Nelson, D., Churchil, L. (2004). Uncertain Benefit: Investigators’ Views and Communications in Early Phase Gene Transfer Trials. Molecular Therapy, 10 (4), 225-231.

Easter, M., Davis, A., Henderson, G. (2004). Confidentiality: More than a Linkage File and a Locked Drawer. IRB: Ethics & Human Research, 26 (2), 13-17.

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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.