Forbidden knowledge: A case study with commentaries exploring ethical issues and genetic research

Brian Schrag, Latisha Love-Gregory, Karen M.T. Muskavitch, Jennifer McCafferty

Research output: Contribution to journalArticle

2 Scopus citations

Abstract

This case is part of a series of case studies used as an exercise within a program on research ethics education. The case involves research on genetic birth defects in a culturally distinct, closed religious community in which elders speak for the community. The case raises ethical issues of informed consent in such a setting; of collaboration with the community; of conflicts between the researchers' responsibilities to the community as a whole and to individual subjects; of the impact of the researcher's findings on the practices and values of the community and issues regarding how the researchers share findings with subjects and how the findings are stored.

Original languageEnglish (US)
Pages (from-to)409-416
Number of pages8
JournalScience and Engineering Ethics
Volume9
Issue number3
StatePublished - Jul 1 2003

Keywords

  • Cases
  • Community collaboration
  • Education
  • Ethics
  • Genetic research
  • Informed consent

ASJC Scopus subject areas

  • Pathology and Forensic Medicine

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    Schrag, B., Love-Gregory, L., Muskavitch, K. M. T., & McCafferty, J. (2003). Forbidden knowledge: A case study with commentaries exploring ethical issues and genetic research. Science and Engineering Ethics, 9(3), 409-416.