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Genetic Research
Recent Projects The Genetics and Public Policy Center is involved in a variety of research projects that investigate genetic research ethics.
Ethical Implications of Including Children in a Large Biobank for Genetic-Epidemiologic Research – see Biobanking
Informed Consent for Enrolling Minors in Genetic Susceptibility Research–This project involved a series of studies that explored the decision-making process that parents and children from families at increased risk of disease go through when considering enrollment in genetic susceptibility research. The project, conducted by Gail Geller and Larry Wissow, was aimed at developing recommendations for the informed consent process when enrolling minors in genetic susceptibility research, and became a part of the NIH Consortium on Informed Consent in Human Subjects Research. Article
Informed Consent to Genetic Research and Identifiability of Samples– Mark Hughes and Jeremy Sugarman partnered with researchers from the NIH and several academic institutions to conduct a survey of patients to learn about their attitudes and preferences regarding the use of clinically-derives blood samples in genetic research. Pubmed Abstract
Ethical and Practical Issues Associated with Aggregating Databases – see Biobanking
Public Expectations for Return of Results from Large-Cohort Genetic Research - see Biobanking
Fogarty International Collaborative Genetics Research Training Program Link to International Activities
Selected Publications
Hull SC, Sharp RR. Botkin JR, Brown M, Hughes M, Sugarman J, Schwinn D. Sankar P, Bolcic- Jankovic D, Clarridge BR, Wilfond BS. Patients' views on identifiability of samples and informed consent for genetic research. Am J Bioethics 2008; 8:62-70.
Caulfield T, McGuire AL, Cho M, Buchanan JA, Burgess MM, Danilczyk U, Diaz CM, Fryer- Edwards K, Green SK, Hodosh A, Juengst ET, Kaye J, Kedes L, Knoppers BM, Lemmens T, Meslin EM, Murphy J, Nussbaum RL, Otlowski M, Pullman D, Ray P N, Sugarman J, Timmons M. Research ethics recommendations for whole-genome research: consensus statement. PLoS Biology. 2008 March;6:430-435.
More
DeCamp M, Sugarman J. Ethics in population-based genetic research. Account Res 2004; 11: 1-26.
DeCamp M, Sugarman J. Ethics in behavioral genetics research. Account Res 2004; 11: 27-47
DeCamp M, Sugarman J. Ethics and research assessing the relative roles of genes and the environment. Account Res 2004; 11: 161-182.
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