Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research Workshop Summary (2010) / Chapter Skim
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Appendix B: Speaker Biographical Sketches
Appendix B: Speaker Biographical Sketches
Pages 61-68
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From page 61... ...
Dr. Burke's research addresses the social, ethical, and policy implications of genetic information, including genetic test evaluation, the development of practice standards for genetically based services, and genetics education for health professionals.
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From page 62... ...
She has served on Tennessee's Genetics Advisory Council since the early 1990s, has participated in numerous policy and academic groups that have considered newborn screening, and is currently conducting research on the impact of false positive results in newborn screening. She has been very involved with the Human Genome Project in the United States, serving as a member of the National Advisory Council for Human Genome Research and more recently as co-Chair of the Ethical, Legal, and Social Implications Working Group of the International Haplotype Mapping Project.
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From page 63... ...
Her early publications include work on the identification of HIV sequences in infected newborns for early diagnosis, the study of mother-to-infant transmission, and evaluation of the efficacy of treatment. More recent publications include evaluations of newborn screening for cystic fibrosis, implications of expanded newborn screening on the healthcare community, and recommendations for successful implementation of newborn screening programs such as cystic fibrosis and now including severe combined immunodeficiency (SCID)
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From page 64... ...
Research and program responsibilities include serving as Director of the Ethics and Outreach Core for the NIEHSfunded Center for Ecogenetics and Environmental Health, co-Director of the Regulatory Support and Bioethics Core for the Institute for Translational Health Sciences, and lead investigator with the NHGRI-funded Center for Genomics and Healthcare Equality. Special interests include community-based research practices, biobank governance, environmental justice, everyday ethics in research practice, feminist and narrative approaches to bioethics, and integrating ethics into training programs, public conversations about science, and public policy.
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From page 65... ...
This work has resulted in more than 150 publications in peer-reviewed journals and book chapters, including a book edited with Robert Cassidy, entitled pediatric Ethics -- From principles to practice, published by Harwood Press. He was a member of the American Academy of Pediatrics Bioethics and AIDS Committees, a member of the National Human Research Protections Advisory Committee for the Office for Human Research Protections of the Department of Health and Human Services, an expert advisor to the Institute of Medicine's Committee on Ethical Conduct of Clinical Research Involving Children and a member of the National Research Council/Institute of Medicine Committee on Ethical Issues in Housing-Related Health Hazard Research Involving Children, Youth, and Families.
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From page 66... ...
The program was the first to use a call-in system by which physicians could obtain test results on any day at any time, the first to provide a portion of the specimen form for the mother to facilitate acquisition of test results, the first to implement HIV testing of all newborns, and the first to test for the lysosomal storage disorders. He has published more than 80 peer-reviewed papers and eight book chapters and has delivered lectures all over the world on many different aspects of newborn blood screening.
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From page 67... ...
She served as Global Chief Privacy Officer for Lenovo, a worldwide computer manufacturer, where she led privacy compliance in human resources, marketing, and product development and served as a public policy advocate on national and international privacy issues. She was also the Chief Privacy Officer at HoffmannLa Roche, handling privacy compliance and best practices in U.S.
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