By Institute of Medicine, Board on Health Sciences Policy, Roundtable on Translating Genomic-Based Research for Health, Adam C. Berger, Steve Olson
Child screening samples are used to check greater than four million babies every year for life-threatening ailments which are treatable if stumbled on at delivery. those specimens additionally signify a probably precious source for public overall healthiness and biomedical study. The IOM held a workshop to envision concerns surrounding using residual specimens for translational examine.
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19 Copyright © National Academy of Sciences. All rights reserved. Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Sum 20 Using Residual Newborn Screening Samples The number one concern that parents feel, in Waldo’s opinion, is protectiveness toward children. “Every parent understands this, particularly if you have a newborn,” she said. ” Some of the fears about potential harm to children are vague and inchoate, but that does not mean that they are invalid.
Iowa, for example, allows studies related to newborn screening, studies that can affect the health of a child from whom no other specimens are available, and studies that can inform existing public health surveillance activities. In some states, the language of policies or laws refers simply to medical research as a permissible use of newborn screening samples (see Box 4-1 for examples of permitted uses). State laws or regulations on the secondary use of residual newborn screening samples typically only allow access by health department personnel, laboratory personnel, or researchers and other individuals who have been granted departmental approval.
Technology would be used to combine all the sources of information with all the support systems that a patient might require over a lifetime. Copyright © National Academy of Sciences. All rights reserved. Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Sum 18 Using Residual Newborn Screening Samples However, linking information systems raises major challenges in the areas of privacy, legal and regulatory considerations, and technology, Caggana said.