In Genetic Testing and Molecular Biomarkers, Susanne Haga writes that the development of new policies regarding the storage and use of newborn screening samples will require careful consideration of impact on screening programs, parent and provider educational materials, and respect for parents among other issues.
Laura Beskow is an author of a Genetics in Medicine commentary that explores the ethical, legal and social issues being raised by efforts to conduct genomic research through large, multi-site consortia such as the NHGRI-funded Electronic Medical Records and Genomics Consortium.
Laura Beskow and colleagues report in PLoS One preliminary findings that a 2-page consent form for biobanking contains the information that most prospective participants identify as important. They suggest that simpified forms with supplemental material for those who desire added information may allow "the most substantively material information to be better highlighted and [enable] potential participants to read the form and ask questions more effectively."
In The American Journal of Human Genetics, Jennifer Wagner writes, "It is important for all of us to be engaged in the debate over the appropriate means to regulate genetic tests, but we must recognize that passing a rule, regulation, or bill is merely one down in the series."
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