Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey Workshop Summary (2014) / Chapter Skim
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Appendix C: Biographical Sketches of Steering Committee Members and Presenters
Appendix C: Biographical Sketches of Steering Committee Members and Presenters
Pages 87-96
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From page 87... ...
She also is director of the Johns Hopkins University/National Human Genome Research Institute Genetic Counseling Training Program. Her research addresses how genetic counseling can improve people's decision-making and coping strategies, and is focused on the role of uncertainty in adapting to the lack of a diagnosis for a rare condition, using genomic sequence information, distinguishing predictors of decision making to enhance informed choice, 87
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From page 88... ...
is chief and senior investigator of the Genetic Disease Research Branch at the National Human Genome Research Institute and director of the institute's physician scientist development program. His research focuses on understanding the relationship of genomic variation to health and disease, and his lab is currently engaged in studies of rare disorders of development and growth and of new approaches to hypothesis-generating clinical genomics research and clinical genome sequencing research.
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From page 89... ...
is professor of pediatrics in the Division of Medical Genetics of the Department of Pediatrics at Stanford University, associate director of the Stanford Center for Biomedical Ethics, and director of the Center for Integration of Research on Genetics and Ethics. Previously, she was an assistant professor of bioethics in the Center for Bioethics and the Department of Molecular and Cellular Engineering at the University of Pennsylvania School of Medicine. Her current research examines ethical and social issues in research on the genetics of behavior, the human microbiome, human genetic variation and natural selection. She is a member of the national advisory boards of the National Human Genome Research Institute and the Genome X-Prize and on the board of reviewing editors of Science. She has also served as a member of the working group on synthetic genomes for the U.S.
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From page 90... ...
, and lead investigator with the Center for Genomics and Healthcare Equality, all at the University of Washington. Her special interests include community-based research practices, biobank governance, environmental justice, everyday ethics in research practice, feminist and narrative approaches to bioethics, and the integration of ethics into training programs, public conversations about science, and public policy.
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From page 91... ...
His current research interests include statistical methodology, trends in educational progression and achievement among American racial and ethnic groups, the uses of educational assessment as a policy tool, and changes in socioeconomic standing, cognition, health, and well-being across the life course. He is a member of the National
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From page 92... ...
He currently directs the Penn Fellowship in Advanced Biomedical Ethics, chairs the Children's Oncology Group Bioethics Committee, and serves as a member of the Pediatrics Ethics Subcommittee of the Food and Drug Administration. His research addresses the roles and responsibilities of principal investigators in multicenter randomized trials, accountability in the clinical research enterprise, children's capacity to engage in research decisions, return of individual genetic results to participants in epidemiologic cohort studies, and the integration of whole-exome sequencing technologies into the clinical care of cancer patients.
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From page 93... ...
She has directed two major national longitudinal studies (the National Health and Nutrition Examination Survey I Epidemiologic Follow-up Study and the National Nursing Home Follow-up Study) , and participated in the redesign of the National Health Interview Survey questionnaire.
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From page 94... ...
His research interests include HIV virology and immunology, laboratory quality assurance, and growth and nutrition. He also is involved in clinical trials conducted as part of the NICHD Domestic and International Pediatric/Perinatal HIV Clinical Studies Network, Women and Infants Transmission Study (for which he chairs the Clinical Working Group)
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From page 95... ...
in economics from Stanford University. MARC WILLIAMS is a pediatric geneticist and director of the Genomic Medicine Institute for Geisinger Health System in Danville, PA. He is the coprincipal investigator of the Geisinger Electronic Medical Records in Genomics (eMERGE)
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