Article

Waiving informed consent in newborn screening research: Balancing social value and respect†‡

  1. Beth A. Tarini§,*,
  2. Wylie Burke,
  3. C. Ronald Scott‖,
  4. Benjamin S. Wilfond††

Article first published online: 15 JAN 2008

DOI: 10.1002/ajmg.c.30164

Issue

American Journal of Medical Genetics Part C: Seminars in Medical Genetics

American Journal of Medical Genetics Part C: Seminars in Medical Genetics

Special Issue: Children and Genetics: Ethics and Policy

Volume 148C, Issue 1, pages 23–30, 15 February 2008

Additional Information

How to Cite

Tarini, B. A., Burke, W., Scott, C. R. and Wilfond, B. S. (2008), Waiving informed consent in newborn screening research: Balancing social value and respect. Am. J. Med. Genet., 148C: 23–30. doi: 10.1002/ajmg.c.30164

Author Information

  1. §

    Beth A. Tarini, MD, MS, is a Lecturer in the Child Health Evaluation and Research Unit at the University of Michigan. Dr. Tarini's research focuses on the organization and delivery of health care services to infants and their families through newborn screening programs.

  2. Wylie Burke, MD, PhD, is a Professor and Chair of the Department of Medical History and Ethics at the University of Washington. Dr. Burke's research addresses the social, ethical and policy implications of genetic information.

  3. ‖

    C. Ronald Scott, MD, is a Director of the Biochemical Genetics and Molecular Diagnostic Laboratories at Seattle Children's, as well as a clinical biochemical geneticist and Professor of Pediatrics at the University of Washington. Dr. Scott's current research focuses on the multiplex analysis of inborn errors using tandem mass spectrometry.

  4. ††

    Benjamin S. Wilfond, MD, is Director of the Treuman Katz Center for Pediatric Bioethics at Children's Hospital and Regional Medical Center, as well as Professor and Chief of the Division of Bioethics, Department of Pediatrics at University of Washington. Dr. Wilfond conducts research on ethical and policy issues related to genetic testing, genetic research and pediatric research.

*Lecturer, Division of General Pediatrics, University of Michigan, 300 N. Ingalls St., Rm 6C11, Ann Arbor, MI 48109.

  1. †

    How to cite this article: Tarini BA, Burke W, Scott CR, Wilfond BS. 2008. Waiving informed consent in newborn screening research: Balancing social value and respect. Am J Med Genet Part C Semin Med Genet 148C:23–30.

  2. ‡

    The views expressed herein do not represent the views of the University of Michigan, the University of Washington or Seattle Children's Hospital.

Publication History

  1. Issue published online: 23 JAN 2008
  2. Article first published online: 15 JAN 2008

Funded by

  • National Human Genome Research Institute. Grant Number: P50HG003374
  • National Institute of Child Health and Human Development
  • National Institute of Child Health and Human Development. Grant Number: HHSN267200603429C

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