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Newborn Blood-Spot Screening and Research

Newborn Dried Blood Spot Screening (NBS) is a public health service that screens newborns for specific disorders.  Originally designed by Robert Guthrie in 1963 to test for phenylketonuria, NBS now screens from 6 to 50 different metabolic, genetic and endocrine disorders.

Blood samples are obtained from a heel-stick during the first few days after birth and sent (typically) to the state health department to be analyzed.  If the results are abnormal, the primary care physician is notified and further tests are recommended.  The testing, storage and use of NBS (and information associated with each sample) are topics of great interest and relevance in bioethics.

Specifically, four main issues are of high interest in academic literature:

  • Consent
  • Public/Clinical Attitudes
  • Retention and Future Use of Samples
  • Advanced Genomic Testing

Introductory Resources

General information about Newborn Dried Blood Spot Screening are available through the NIH and other organizations.

  • Annual Review of Nursing Research

    The Annual Review of Nursing Research published an article that details the history, evolution and modern ethical issues surrounding Newborn Blood Screening. Specifically, this article focuses on the accuracy of results and paternal education.

  • International and Comparative Health Law and Ethics

    In 2004, the International and Comparative Health Law and Ethics published a review detailing the potential uses, associated ethical dilemmas, and recommended guidelines for Newborn Blood Screening.

  • Baby's First Test 

    The Baby’s First Test website offers helpful resources regarding Newborn Blood Screening as well as state-by-state information on what is tested.

Translational Research Ethics Consult

The Bioethics and Subject Advocacy Program of the Indiana CTSI provides consultations to help clarify and address ethical issues that arise when conducting translational research.

Request an Ethics Consult