Including ELSI research questions in newborn screening pilot studies.,Genetics in Medicine

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Including ELSI research questions in newborn screening pilot studies.
Genetics in Medicine ( IF 8.8 ) Pub Date : 2018-Aug-13 , DOI: 10.1038/s41436-018-0101-x
Aaron J Goldenberg ₁ , Michele Lloyd-Puryear ₂ , Jeffrey P Brosco ₃ , Bradford Therrell ₄ , Lynn Bush ₅ , Susan Berry ₆ , Amy Brower ₇ , Natasha Bonhomme ₈ , Bruce Bowdish ₇ , Denise Chrysler ₉ , Angus Clarke ₁₀ , Thomas Crawford ₁₁ , Edward Goldman ₁₂ , Sally Hiner ₁₃ , R Rodney Howell ₁₄ , David Orren ₁₅ , Benjamin S Wilfond ₁₆ , Michael Watson ₅ ,

Affiliation

Department of Bioethics, Center for Genetic Research Ethics and Law, Case Western Reserve University, Cleveland, Ohio, USA.
Parent Project Muscular Dystrophy, Hackensack, New Jersey, USA.
Institute for Bioethics and Health Policy, Mailman Center for Child Development, and Department of Pediatrics, University of Miami, Miami, Florida, USA.
University of Texas Health Science Center at San Antonio and National Newborn Screening and Global Resource Center, Austin, Texas, USA.
Pediatric Clinical Genetics and Program in Women & Children's Bioethics, Columbia University Medical Center, New York, New York, USA.
Departments of Pediatrics and Genetics, Cell Biology & Development, Division of Genetics and Metabolism, University of Minnesota, Minneapolis, Minnesota, USA.
American College of Medical Genetics and Genomics, Bethesda, Maryland, USA.
Genetic Alliance, Washington, DC, USA.
Network for Public Health Law - Mid-States Region, Ann Arbor, Michigan, USA.
Department of Medical Genetics, University Hospital Wales, Cardiff, Wales, UK.
Departments of Neurology and Pediatrics, Johns Hopkins University, Baltimore, Maryland, USA.
University of Michigan Law School and member of the Center for Bioethics in Social Science and Medicine, The University of Michigan, Ann Arbor, Michigan, USA.
Michigan Public Health Institute, Okemos, Michigan, USA.
Miller School of Medicine, University of Miami, Miami, Florida, USA.
Minnesota Department of Health, Minneapolis, Minnesota, USA.
Department of Pediatrics, Treuman Katz Center for Pediatric Bioethics Seattle Children's Research Institute, University of Washington School of Medicine, Seattle, Washington, USA.

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.

中文翻译：

包括新生儿筛查试点研究中的 ELSI 研究问题。

为州新生儿筛查 (NBS) 小组添加新条件的证据审查过程依赖于旨在评估筛查的潜在益处和危害的试点研究的数据。然而，在本研究中对筛查的伦理、法律和社会影响 (ELSI) 的考虑是有限的。本文概述了与新生儿筛查政策和实践相关的重要 ELSI 问题，作为帮助研究人员将 ELSI 纳入 NBS 试点研究的资源。

更新日期：2018-08-13

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