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Including ELSI research questions in newborn screening pilot studies

Goldenberg, Aaron J., Lloyd-Puryear, Michele, Brosco, Jeffrey P., Therrell, Bradford, Bush, Lynn, Berry, Susan, Brower, Amy, Bonhomme, Natasha, Bowdish, Bruce, Chrysler, Denise, Clarke, Angus, Crawford, Thomas, Goldman, Edward, Hiner, Sally, Howell, R. Rodney, Orren, David, Wilfond, Benjamin S., Watson, Michael and Brosco, Jeffrey 2019. Including ELSI research questions in newborn screening pilot studies. Genetics in Medicine 21 , pp. 525-533. 10.1038/s41436-018-0101-x

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Background The evidence review processes for adding new conditions to state newborn screening (NBS) panels rely on data from pilot studies aimed at assessing the potential benefits and harms of screening. However, the consideration of ethical, legal, and social implications (ELSI) of screening within this research has been limited. This paper outlines important ELSI issues related to newborn screening policy and practices as a resource to help researchers integrate ELSI into NBS pilot studies. Approach Members of the Bioethics and Legal Workgroup for the Newborn Screening Translational Research Network facilitated a series of professional and public discussions aimed at engaging NBS stakeholders to identify important existing and emerging ELSI challenges accompanying NBS. Results Integrating ELSI questions into pilot studies will help NBS programs to better understand the potential impact of screening for a new condition on newborns and families, and make crucial policy decisions aimed at maximized benefits and mitigating the potential negative medical or social implications of screening.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Publisher: Nature Publishing Group
ISSN: 1098-3600
Date of First Compliant Deposit: 11 October 2018
Date of Acceptance: 13 August 2018
Last Modified: 16 Apr 2019 14:09

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