Genetics and public health: Informed consent beyond the clinical encounter

Nancy Press, Ellen Wright Clayton

Research output: Chapter in Book/Report/Conference proceedingChapter


This chapter begins with a discussion of the barriers to adequate informed consent. It then presents examples that show how public health and genetics might come together, either in research or in clinical programs. The examples cover prenatal genetic screening, newborn screening programs, and the ways in which all genetics research inevitably involves families. It is argued that in designing modes of obtaining informed consent, explicit consideration must be given to the structural forces that may make truly informed consent difficult in each particular situation. Moreover, it must be realized that these structural forces have the potential to increase in importance and impact when coupled with any program that purports to have the public's health at stake.

Original languageEnglish (US)
Title of host publicationGenetics and Public Health in the 21st Century
Subtitle of host publicationUsing Genetic Information to Improve Health and Prevent Disease
PublisherOxford University Press
ISBN (Electronic)9780199864485
ISBN (Print)9780195128307
StatePublished - Sep 1 2009
Externally publishedYes


  • Families
  • Informed consent
  • Public health
  • Screening programs

ASJC Scopus subject areas

  • General Medicine


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