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 discovered at beginning. those specimens additionally characterize a probably valuable source for public well-being and biomedical study. The IOM held a workshop to check concerns surrounding using residual specimens for translational examine.
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Extra resources for Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Summary
Thousands of genetic variants can be detected in residual dried blood spots collected years before. Dried blood spots represent “a huge repository of information about biomarkers and molecules that are associated with health,” Kardia said. As an aside, Kardia noted that dried blood spots have proven so useful that they are being used outside of newborn screening. Pharmaceutical companies are beginning to collect dried blood spots as opposed to venous blood samples to test for the presence of particular molecules and to determine the efficacy or toxicity of drugs.
The question of a child’s paternity can become an issue if the results of tests are made known. Or, if a first child is born with a disorder and a family makes strenuous efforts to avoid having another child with the same condition, what message does that give to the first child? ” Waldo asked. ” Genetics research has the potential to make many decisions surrounding reproduction difficult. But “the train is unstoppable,” Waldo said. ” Newborn screening programs also raise difficult issues concerning autonomy, control, and choice.
First, regulations currently provide the floor for what can be done, not the ceiling. Other standards may be needed to provide additional guidance. The researchers who were involved in the Henrietta Lacks and Havasupai Copyright © National Academy of Sciences. All rights reserved. ” Another lesson is that “business as usual” practices can cause harm. Researchers are not bad people who have intention to harm. Yet their research and public health practices can cause harm that was unanticipated or overlooked.
Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Summary by Institute of Medicine, Board on Health Sciences Policy, Roundtable on Translating Genomic-Based Research for Health, Adam C. Berger, Steve Olson