The Role of the Federal Government in Supporting State Newborn Screening Programs

Michele Lloyd-Puryear, Bradford L. Therrell, Marie Y. Mann, James R. Eckman, Joseph Telfair

Research output: Contribution to book or proceedingChapter

Abstract

Prior to employment at Georgia Southern University, Joseph Telfair authored "The Role of the Federal Government in Supporting State Newborn Screening Programs" in Ethics and Newborn Genetic Screening: New Technologies, New Challenges.

Book Summary: The United States has the first and the farthest-reaching newborn genetic screening program in the world. In recent years, individual states have expanded their newborn screening programs to include many more genetic conditions, as new medical knowledge and new testing technologies have become available. The contributors to this provocative collection study the complex ethical and policy challenges present in the changing newborn screening environment and offer guidance to professionals, policymakers, and the general public.

Experts from the fields of bioethics, genetics, pediatrics, public health, health policy, law, and political science identify and analyze four social and ethical issues critical to newborn screening policy: the distribution of costs and benefits; information, consent, and privacy; consultation and decision making; and race, ethnicity, and socioeconomic status. In the process, the contributors capture the difficulties of trying to forge ethical public policy at the intersection of parental concerns, new technologies, and economic interests.
Original languageAmerican English
Title of host publicationEthics and Newborn Genetic Screening: New Technologies, New Challenges
StatePublished - May 2009

Disciplines

  • Community Health
  • Community Health and Preventive Medicine
  • Public Health
  • Public Health Education and Promotion

Keywords

  • Federal government
  • Role
  • Screening programs
  • State newborn

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