title: Forbidden knowledge. A case study with commentaries exploring ethical issues and genetic research.
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.
authors.affiliation: Washington University School of Medicine, USA. bschrag@indiana.edu
authors.forename: Brian
authors.initials: B
authors.lastname: Schrag
authors.forename: Latisha
authors.initials: L
authors.lastname: Love-Gregory
authors.forename: Karen M
authors.initials: KM
authors.lastname: Muskavitch
authors.forename: Jennifer
authors.initials: J
authors.lastname: McCafferty
mesh_terms: D000013:Congenital Abnormalities / Q000235:genetics; D004989:Ethics; D004995:Ethics, Professional; D005260:Female; D005787:Gene Frequency; D005808:Genes, Recessive / Q000235:genetics; D036281:Genetic Research / Q000941:ethics*; D005820:Genetic Testing / Q000941:ethics*; D006801:Humans; D007231:Infant, Newborn; D007258:Informed Consent / Q000941:ethics; D008297:Male; D008393:Marriage; D019982:Organizational Case Studies; D012070:Religion and Science; D014481:United States