Stacie Adams

Stacie Adams is a Pediatric resident at the Helen DeVos Children’s Hospital in Grand Rapids, Michigan. She received her medical degree from the University of North Carolina at Chapel Hill in 2011 and her Bachelor of Science Degree in Biology from Duke University in 2007. As a former trainee of the Center for Genomics and Society, Stacie worked with CGS investigator Jim Evans on research regarding direct-to-consumer marketing of genetic testing. She plans to pursue specialized training in Pediatric Genetics after residency. Her primary interest is inborn errors of metabolism. Currently, she is working with the genetics and metabolism faculty both at Helen DeVos and at the University of Michigan to develop new research projects in genetics and gain more experience treating patients with inborn errors.  

Hunter Appler

J. Hunter Appler was a law student at UNC-Chapel Hill. He received his B.A. in Criminal Justice from the George Washington University in 2006. As a CGS trainee, Hunter worked with Professors John Conley and Arlene Davis on biobank governance. His interests include health law and the implications of genomics for the legal doctrines of proximate cause and foreseeability.

Cheryl Brewer

Cheryl A. Brewer, Ph.D., R.N., M.S.N., received her Ph.D. in Nursing from UNC-CH in 2010. She received a Master of Science Degree in Nursing Administration from Duke University, and a Bachelor of Science Degree in Nursing from North Carolina Central University. Cheryl’s research interest includes individuals with sickle cell disease (SCD). She conducts research designed to improve health-related quality of life (HRQOL) in individuals, particularly adolescents, with SCD. She is also interested in family functioning processes in families of children with SCD, and developing sickle cell self-care management skills. She is in the process of planning studies to improve HRQOL in adolescents with cancer as well as SCD. As a CGS trainee, Cheryl worked with Marcia Van Riper, a CGS investigator and associate professor in the UNC School of Nursing, examining how families define and manage ethical issues that emerge during genetic testing for prenatal screening for Down Syndrome and BRCA 1 & 2 testing for breast cancer. Cheryl also participated in CGS seminars and the ELSI Reading Group as well as professional training workshops, programs, conferences, seminars.  Cheryl is presently employed as a Clinical Trials Manager at the Duke Cancer Care Research Program. In this capacity, Cheryl provides managerial support for research staff and administrative oversight for a myriad of clinical trials designed to enhance the quality of life for individuals with cancer, and improve symptom management, as well as the care and overall experience of cancer. Cheryl continues to conduct SCD research.

Allen Buansi

Allen Buansi, B.A., was a summer intern with the CGS in 2009. Working with CGS investigators Debra Skinner and Don Bailey, he helped analyze and synthesize data for the Fragile X Newborn Screening Study. He also worked with Arlene Davis to explore bioethics in the legal system in several law enforcement agencies, and with Rebecca Walker to code literature in an effort to parse out the meaning of ethics in the ELSI acronym. He presently works with an academic mentoring initiative called Promoting Academic Success (PAS) at the FPG Child Development Institute and will enter law school in the fall of 2012.

Katie Byerly

Katie Byerly, B.A., currently works with the Centers for Disease Control and Prevention's Public Health Associate Program as field assignee at the Abilene-Taylor County Public Health District. She graduated from UNC Chapel Hill in 2011 with a double major in Anthropology and Public Health Policy and Management. From 2008 to 2011 she worked with CGS investigator Lynn Dressler on a study of large-scale genetic research projects including HapMap, Single Nucleotide Polymorphism (SNP) and The Cancer Genome Atlas (TCGA) projects, identifying common ELSI themes and issues through literature reviews and analysis of qualitative interviews with the goal of informing future policy decisions relevant to genetic research.   

Summer Choudhury

Summer Choudhury, M.P.H., received her B.S. in Biology, B.A. in Philosophy and Masters in Public Health from East Carolina University. Her past research focused on assessing parents’ and clinicians’ knowledge and awareness of the North Carolina’s Newborn Screening Program (NBS), and evaluating NBS information dissemination practices in eastern North Carolina. She completed an internship at the CGS with Debra Skinner as part of her M.P.H. program where she collected and analyzed data for the Fragile X Newborn Screening Study and co-authored presentations and manuscripts with Skinner and Don Bailey based on these analyses. She currently works in the Division of Pulmonary Medicine and Critical Care at UNC-CH. Her professional interests include the ethical, legal and social issues surrounding informed consent in genetic and medical testing, decision making in those with diminished capacities, surrogate decision-making, and clinician-family communication comprehension. Future plans include medical school.

Allison Williams Dobson

Allison Williams Dobson, J.D., Ph.D. completed a B.S. in Applied Biology at Georgia Tech (1996), a Ph.D. in Basic Medical Sciences at the University of South Alabama College of Medicine (2001), an NIH postdoctoral fellowship in Molecular Toxicology at Wake Forest University School of Medicine (2003), and a J.D. focused on intellectual property law at the University of North Carolina School of Law (2009). She also taught Anatomy & Physiology as assistant professor of biology at Winston-Salem State University (2004-2006).  Allison was a postdoctoral research fellow with the Center for Genomics and Society from 2009-2010. Her research interests cover a broad range of topics at the intersection of medical sciences and law, including biotechnology patent law, genomics, personalized medicine, and genetic privacy issues arising from rapid advances in DNA technology. Allison continues to collaborate with colleagues at CGS as a contributor to the legal group. In 2011, the group proposed a new legal model for biobanking (Genomics, biobanks, and the trade-secret model. Science, 332:309-10, 2011). Allison also wrote with CGS investigator Jim Evans on the topic of gene patents in Genome Biology in 2012 (commissioned piece - to be submitted February 2012). Allison is now admitted to practice in North Carolina and in the U.S. Patent and Trademark Office. She occasionally blogs at the Genomics Law Report and tweets biotechnology and patent news as @DNAdrivenDIVA while she continues to explore future career directions.

Michele Easter

Michele Easter is a postdoctoral associate at the Center for Public Genomics at Duke University and affiliated with Genome Ethics, Law & Policy in the Institute for Genome Sciences & Policy, also at Duke.  She was a CGS pre-doctoral trainee and received her Ph.D. in 2010 from the Department of Sociology at UNC-Chapel Hill. At CGS she contributed to projects on biobanking and clinical whole genome sequencing. Her research interest is public understanding of behavioral genetics, particularly how genes are (or are not) reconciled with social forces and individual responsibility. Her dissertation examined how people with eating disorders—anorexia and bulimia nervosa—understand and respond to the idea that genes could play a role in these conditions. In her current work, she continues to develop and build on findings from that study regarding medicalization, stigma, self-perceived agency, and gene-environment interaction. She is in the process of designing a study of similar themes in the context of violent and antisocial behavior, and hopes to begin data collection in 2012. She is also collaborating with investigators at Duke on a qualitative study of clinical whole genome sequencing in pediatric diagnostics.    

Wendell Fortson

Wendell Fortson, Ph.D, J.D. was a postdoctoral trainee in the Center for Genomics and Society. He received his B.S. in Biology from Tennessee State University, Ph.D. in Biomedical Sciences (Cancer Biology) from Morehouse School of Medicine and J.D. from North Carolina Central University School of Law. His dissertation research focused on therapeutic strategies for prostate cancer based on the function of ERG (ets -related gene). He worked with John Conley, Ph.D., J.D. and Arlene Davis, J.D. to investigate the emerging ethical, legal, and social issues (ELSI) relating to long-term storage of human specimens and genomic health disparities. With the patients’ best interest always at the forefront, Wendell endeavors to unite his scientific and legal knowledge to help influence policies that will advance biomedical research and improve the healthcare system on the state and federal levels.  Wendell will join a biopharma company  at an executive level position in  January 2013.

Danielle Gilliard

Danielle Gilliard is a senior at UNC-Chapel Hill. She is majoring in International Studies with concentrations in Global Health and Asia, and minoring in Medical Anthropology and Mandarin Chinese. Danielle’s research interests are community development of minority and underserved communities as well as health education interventions in the United States and developing countries. Domestically, she has interests in health education interventions in the African American community for a variety of chronic diseases that disproportionately affect this community, specifically colorectal cancer. Internationally, she has interests in global health pertaining to cross-cultural aspects of health education practices. Danielle is working with CGS investigator Dr. Malika Roman-Isler and CGS post-doctoral fellow Dr. Karey Sutton on the Community Perspectives Project, helping to investigate the views and concerns of minority communities to identify possible barriers to translational genomics research for health disparities.

Isaura Godinez

Isaura Godinez is a senior at California State University at Chico. As a MURAP summer intern, she investigated ethical and sociopolitical issues related to the treatment and management of HIV/AIDS in Zambia. She is planning to attend graduate school in molecular anthropology.

Freda Halls

Freda Halls is a graduate student in the Department of School Psychology at UNC-Chapel Hill. She received her B.A. in psychology from North Carolina State University. Her research interests include minority families of children with disabilities, particularly their interactions in the educational process and implications of genetic diagnoses for minority populations. She is currently completing a doctoral internship with Virginia Beach City Public Schools where she serves as the psychology resident at an elementary school. In addition to her school placement, she also participates on two rotations: preschool diagnostic assessment and Autism diagnostic evaluation which gives her the opportunity to work directly with families of children with disabilities.

Stanley Hassinger

Stanley Hassinger was a medical student at UNC Chapel Hill. He received his B.S. in biochemistry from NC State University and then completed a master’s degree in philosophy at Virginia Tech. His primary interests are in the therapy/enhancement debate. As a CGS trainee, he worked on a project with Arlene Davis and Rebecca Walker investigating what effect prenatal genetic interventions have on the relationship between parents and children. 

Hedy Lee

Hedwig (Hedy) Lee received her Ph.D. in sociology from the University of North Carolina at Chapel Hill in 2009, and was awarded an Interdisciplinary Certificate in Health Disparities from the University of North Carolina at Chapel Hill School of Public Health and School of Medicine Program on Ethnicity, Culture and Health Outcomes. During her time at UNC she also worked on a large-scale project involving DNA collection from undergraduates in a large Southern University and published a paper that discussed the data collection process. Currently, Dr. Lee is an Assistant Professor of Sociology and a research affiliate at the Center for Studies in Demography and Ecology at the University of Washington (UW). Prior to coming to UW, she was a Robert Wood Johnson Health and Society Scholar at the University of Michigan. Dr. Lee is broadly interested in socioeconomic and racial/ethnic inequalities in health and has studied how social contexts of disadvantage in adolescence influence health and other outcomes in adulthood. Her recent work has explored the effects of family poverty on obesity and physical activity in adolescence and young adulthood, the impact of discrimination on mental health, and the influence of health in early life on status attainment in adulthood.

Marsha Michie

Marsha Michie was a Postdoctoral Fellow with the UNC Center for Genomics and Society from 2010-2012. She is a cultural anthropologist who has conducted ethnographic and qualitative research on the ways that patients and families deal with genetic disorders; the ways that research participants make meaning out of genetic information; and moral and religious perspectives on genomics research and new technologies. Marsha received a K99/R00 grant from NHGRI in 2012 to study ethical and social aspects of the translational pathway for non-invasive prenatal genetic testing. She is currently pursuing this research as a Postdoctoral Fellow at Stanford University's Center for Integration of Research on Genetics and Ethics.

Clair Morrissey

Clair Morrissey, Ph.D., is an Assistant Professor of Philosophy at Occidental College. As a CGS Trainee she worked with CHS investigator Rebecca Walker on the Examining the 'E' in 'ELSI' Project, the first results of which ("Charting ELSI's Course for the Future: Lessons from the Recent Past") is published in Genetics in Medicine (February 2012), and the second in press in . Clair works in practical ethics, specifically bioethics and international justice. She teaches courses in these areas as well as environmental ethics, animal ethics and philosophy of race.

Jane Peace

Jane Peace, Ph.D., is an Assistant Professor in the Duke University School of Nursing. She was a 2009-2010 post-doctoral fellow in the School of Nursing at UNC-Chapel Hill. She earned a Ph.D. in Nursing at University of Wisconsin-Madison School of Nursing, and M.S.N. at UNC-Chapel Hill. As a CGS trainee, she worked with CGS investigators Marcia Van Riper and Debra Skinner to explore the experiences of parents who adopted children with Fragile X Syndrome, with emphasis on their experiences in sharing health information with birth families and participating in research. She continues to conduct research focusing on the needs of diverse and reconstituted families related to managing and sharing family health information.

Ashton Powell

Ashton Powell, Ph.D. is an Instructor of Biology at the North Carolina School of Science & Mathematics where he teaches Anatomy & Physiology, Developmental Biology, Neuroscience, and Science Policy. Ashton received his Ph.D. in the Neurobiology Curriculum at UNC-Chapel Hill in 2007. As a student, he was awarded a fellowship at the Duke Genome Ethics, Law and Policy (GELP) Center where he studied how patents on genetic testing impacted patient access to screening. After graduating, Ashton was a trainee at the Center for Genomics and Society where he studied the topics of newborn screening and the governance of biobanks. In the spring of 2009 Ashton was awarded the Christine Mirzayan Science & Technology Policy Graduate Fellowship Program of the National Academies where he worked with the Committee on Science, Technology, and Law (CSTL).

Kelly Raspberry

Kelly Raspberry received her Ph.D. in the Department of Anthropology at UNC-Chapel Hill in 2007, and her M.A. in medical anthropology in 2001 from UNC-Chapel Hill. Her dissertation focused on assisted reproductive technologies in Argentina, specifically examining how reproductive and genetic technologies are not culturally-neutral techniques, but rather practices that change according to their place of production and transform the societies they travel to. Her research contributes a nuanced ethnographic analysis to academic and policy debates on the ethical, legal, and social facets of global reproductive and genetic technologies. Since 2000, she has also worked with Debra Skinner on an ELSI-funded project, Culture and Family Interpretations of Genetic Disorders, as a research ethnographer and co-author on various papers and presentations examining genetic identity and the notion of a genetic body. In addition, as a CGS trainee, she has worked with Debra Skinner since 2007 on the NIH-funded project, Family Adaptation to Fragile X Syndrome, with a particular focus on understandings of genetic risk and the impact of genetic diagnosis on reproductive and carrier testing decisions. Kelly and Debra recently published several articles on reproductive choices and meanings of genetic risk for families who carry the fragile X gene in the U.S. Kelly is currently working on a book manuscript, Conflicted Conceptions, Fertile Encounters: An Ethnography of Assisted Reproduction Practices in Argentina, based on her dissertation research.

Her ongoing research interests include global practices of assisted reproductive technologies, as well as differing cultural meanings and values of such genetic material as genes, stem cells, and embryos. She has recently become a research post-doc at FPG Child Development Institute where she and Debra Skinner will continue to collaborate on research regarding the ELSI issues of translating whole exome sequencing to clinical medicine.

Tammy Root

Tammy L. Root, Ph.D., is the Research Coordinator for the School of Health Sciences at Walden University. Previously, she was a Research Assistant Professor in Eating Disorders in the School of Medicine at UNC-Chapel Hill. While at UNC, Dr. Root's primary research interest focused on understanding genetic and environmental influences on the comorbidity of eating disorders and substance use. She was involved with the Swedish Twin Registry Studies and the Price Foundation Studies. Her goal was to elucidate the current knowledge on this comorbidity in hopes of better informing prevention and treatment efforts, while simultaneously applying the most current and innovative methodology for best answering these research questions. Dr. Root continues to complete projects with collaborators at UNC using the Swedish Twin Registry.

Meghan Shanahan

Meghan Shanahan, Ph.D., is currently a Research Scientist at the Injury Prevention Research Center at the University of North Carolina at Chapel Hill. She received her Ph.D. from the Department of Maternal and Child Health in the UNC Gillings School of Global Public Health. During her time as a CGS trainee, Meghan worked with Arlene Davis and Don Bailey on a project that examined the ethical, legal, and social implications of expanded newborn screening. Currently, Meghan is involved in the evaluation of child maltreatment programs and is developing a child maltreatment surveillance system for Wake County.

Sondra Smolek

Sondra Smolek received a Ph.D. and M.A. in sociology from UNC-Chapel Hill and a B.A. in Sociology/Anthropology from St. Mary’s College of Maryland. While a trainee at CGS, she assisted with two qualitative studies of perspectives on the return of research results. In addition, she contributed to data collection for a qualitative study of ELSI issues in large-scale genomic research projects, and is currently involved in data analysis and manuscript preparation for that study. Her dissertation focused on experiences of mothers of children with fragile X syndrome with regard to caregiving, work, and family relationships. She is preparing manuscripts based on her dissertation while seeking a research position in the Chapel Hill area.

Rene Sterling

Rene Sterling, M.H.A., Ph.D., received her doctorate and master’s degrees from the Department of Health Policy and Management at UNC. Rene was a pre-doctoral trainee and post-doctoral fellow with CGS from 2008-2010. Her dissertation research focused on the on-line direct-to-consumer (DTC) marketing and sale of genetic tests, with a focus on nutrigenomic tests for diet-related chronic health conditions with multiple causes (Sterling, Genetics in Medicine, 2008). As a post-doctoral fellow, Rene continued research around DTC testing and also worked on an organizational study of entities that collect, store, and/or use of biological specimens for research (Cadigan, Easter, et al., Genetics in Medicine, 2010); and a historical policy study of the Human Genome Project, International HapMap Project, and related initiatives. As a pre-doctoral trainee, Rene published a systematic review of studies identifying public opinions about and willingness to participate in genetic variation research (Sterling, Henderson, Corbie-Smith, American Journal of Public Health 2006).

Currently, Rene is a Senior Advisor in the Bureau of Primary Health Care (BPHC), one of several Bureaus within the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services. In addition to advising on programmatic and policy issues impacting the Health Center Program, Rene also provides leadership around BPHC's implementation of the National HIV/AIDS Strategy. Rene continues to work with CGS faculty on policy-focused projects.

Karey Sutton

Karey Sutton, PhD, was a post doctoral trainee with the Center for Genomics and Society. She completed a B.A. in Classical Civilization and B.S. in Chemistry at Howard University (2004) and a Ph.D. in Science and Technology Studies at Virginia Polytechnic Institute and State University (2010). While at Virginia Tech, Karey was awarded the Ruth L. Kirschstein National Research Service Award (F31) by the National Human Genome Research Institute. Her dissertation research focused on understanding the views of African Americans and Hispanic/Latinos concerning genetic research and genetic testing. Other research areas of interest are how genomic information affects members of minority communities, issues related to the involvement of minorities in genetic research, genomics policy development, and strategies to effectively engage the African American community.

Ian Whitmarsh

Ian Whitmarsh, Ph.D. was an ELSI-funded Postdoctoral Fellow in the Carolina Center for Genome Sciences at UNC during the 2005-2007 P20 planning grant for the CGS. He received his Ph.D. in cultural anthropology from Princeton University in 2005. As a post-doctoral fellow, he worked with Debra Skinner and Don Bailey to explore the significance of ambiguity in genetic discourses through research with families of children diagnosed with either Fragile X, Klinefelter or Turner syndromes and the significance of receiving an unexpected diagnosis as the result of a genetic test. Currently, Ian is an Assistant Professor in the Department of Anthropology, History & Social Medicine at the University of California-San Francisco, where he is continuing his research analyzing the globalization of genomic research on the African diaspora and biomedical links between desire and ethnicity.

Whitmarsh is the author of several articles and a book, Biomedical Ambiguity: Race, Asthma, and the Contested Meaning of Genetics in the Caribbean (2008, Cornell University Press), an ethnography of genomics research in the Caribbean country of Barbados that examines the significance of international genetics research on race and disease. Whitmarsh is also co-editor with David S. Jones of What’s the Use of Race: Modern Governance and the Biology of Difference (2010, MIT Press). This volume brings together leading social science scholars addressing how race is used in law, science, and medicine. The essays examine the use of race and genetics in the courtroom and law enforcement, genomic science of human diversity, and inequalities of health and disease. Whitmarsh’s current research explores the science and policy of diabetes and obesity in the US and Trinidad and Tobago, exploring how this expertise relies on particular forms of motherhood, children, and home.

Pamela Williams

Pam Williams, Ph.D., conducted postdoctoral research training with CGS support from 2009-2010. Her interests focused on learning community based participatory research (CBPR) partnership approaches to conducting research with communities living with rare genetic conditions. CGS funding helped her build relationships with rare disease community leaders that are still active in her faculty career. A seminar on qualitative methods provided by CGS faculty supported her use of content analysis methods that she continues to apply in her research and grant proposals focusing on ethical, legal and social issues of genomic health care research. Her postdoctoral work examining research marginalization and healthcare disparities for patients living with rare genetic conditions culminated in publication of a proposed policy framework to address these ethical and social issues (Williams PH. Policy Framework for Rare Disease Health Disparities. Policy and Politics in Nursing Practice, Apr 12 2011).

Dr. Williams is now a tenure track assistant professor of research at the Medical University of South Carolina (MUSC), in the College of Nursing. She continues to integrate her legal experience/training, CGS experiences, and current ELSI issues into her doctoral level policy, ethics and research methods courses. Her most recent research funding award was through a CTSA sponsored program under the MUSC Center for Community Health Partnerships, that involves a community partnership with community leaders to study health disparity and social issues for persons living with the rare genetic disorder known as “Alpha-1”. She is an active participant and served as workshop leader in the Institute of Human Values at MUSC, an interdisciplinary program of ethics collaboration and scholarship. Her research interests include ELSI issues for rare genetic disease communities, measurement development to study ELSI phenomena and genomic research biobanking in clinical settings. Current projects include a R21 proposal to the National Human Genome Research Institute (NHGRI) ELSI section regarding biobanking perceptions and CBPR partnership development of a NHGRI ELSI R21 proposal for rare disease burden measurement.

Louise Winstanly

Louise Winstanly received her law degree (LLB (Hons) Business Law) from the London Guildhall University in the United Kingdom. She is admitted to the New York Bar. She recently completed her Masters degree in Bioethics at Union College/Mt. Sinai Hospital, NY. As a CGS trainee, she worked on clinical and research ethics projects with Arlene Davis and served as an intern on the UNC Hospital Ethics Committee. Her area of research interest is in law and policy issues pertaining to stem cell research, informed consent – pediatric research and reproductive technology. She is further interested in the protection of patient privacy related to genetic research. She is currently a member of the instructor team of the Global Learning Program at the UNC Gillings School of Global Public Health. Ethics is the platform from which she approaches public health and her interests in HIV/AIDS and infectious diseases.

The Center for Genomics and Society is housed within the Carolina Center for Genome Sciences at the University of North Carolina - Chapel Hill.

It is supported by the ELSI Research Program of the National Human Genome Research Institute of the National Institutes of Health, Grant Number P50HG004488.